tag:blogger.com,1999:blog-11809462820704004912024-03-14T04:02:17.737-07:00Our Family in a SnapshotNateGhttp://www.blogger.com/profile/12985817527057911041noreply@blogger.comBlogger73125tag:blogger.com,1999:blog-1180946282070400491.post-59094926316974374192016-02-19T09:33:00.001-08:002016-02-19T09:33:41.369-08:00Tips for Surviving a Hospital Stay
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Over the past 4 years we have cozied up at the hospital more
than a few times. Anything more than one time makes a person an expert (so says
the blogs and Google on the World Wide Web). Therefore, as an expert of
hospital stays, I feel it is my duty to share tips for surviving. I mean that
is what we as humans do now. We share everything because once we do it one time
we know more than medical doctors or people who devote their life to research. Not
just anyone can handle an overnight (or nights) stay at a hospital. And only
the strongest will survive. <i style="mso-bidi-font-style: normal;">Warning</i>,
some of this may shock you but it is important for the future of our children.
Remember, one tiny unhappy moment in a child’s life will most likely ruin them
forever.</div>
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<b style="mso-bidi-font-weight: normal;">Tip #1 - Do not post
on social media about your child being sick </b></div>
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It is important you stay offline and focus solely on your
child’s care. Posting status updates will lead to people saying things like “oh
no, poor guy, feel better” which leads to your child thinking they did
something wrong and that you are disappointed in their choice to be sick. </div>
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<b style="mso-bidi-font-weight: normal;">Tip #2 - Do not take
pictures of your child while sick </b></div>
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It’s an invasion of privacy and only the best pictures of
people should be available to the viewing public. </div>
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<b style="mso-bidi-font-weight: normal;">Tip #3 - Do not turn
the television on at anytime</b></div>
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As a parent you should only be reading books and playing
educational games with your child. If not, there is a chance that child will
get addicted to television.</div>
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<b style="mso-bidi-font-weight: normal;">Tip #4 -If you are
one of “those” parents and you MUST have the television on make sure it is only
kid focused TV </b></div>
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Keep the news off as it can be very upsetting to children
and talk shows are just trash so no talk shows.</div>
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<b style="mso-bidi-font-weight: normal;">Tip #5 - During your
stay only focus on your child</b></div>
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This is not a vacation for you. Do not read magazines, do
not shop online and do not watch TV if your child is awake. </div>
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<b style="mso-bidi-font-weight: normal;">Tip #6 - Do not sleep
. . . ever </b></div>
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Make sure you are always awake. A doctor or nurse could walk
in at anytime. If they see you are asleep they will assume you sleep at home
and no good medical professional will ever allow a child to go home with a
parent who sleeps. Ever!</div>
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<b style="mso-bidi-font-weight: normal;">Tip #7 – Do not bring
items from home</b></div>
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When a child sees an item from home they will start to
associate being sick with that item and therefore they will never feel
comfortable at home again and you will have to move.</div>
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<b style="mso-bidi-font-weight: normal;">Tip #8 - Do not get
into bed with your child </b></div>
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If the chair next to the bed is uncomfortable <span style="mso-spacerun: yes;"> </span>. . . deal with it. You are a parent.
You live for your child and nothing else.</div>
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<b style="mso-bidi-font-weight: normal;">Tip #9 – It is VERY important
to only eat the healthiest of food </b></div>
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Fruits, vegetables, protein, fresh kale juice, vegan, gluten
free, soy free, and dairy free are the only things that should be allowed in
your child’s room. If it’s not made with 100% virgin coconut oil mined from
coconuts from local farmers it should be thrown out immediately. </div>
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<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Most Important Tip</b></div>
<div class="MsoNormal">
Snuggle with your little buddy as much as you can. With no
other distractions it is the best time to be cozy with your sick little bug.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
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<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Please feel free to use this research in medical papers and
thesis dissertations.</div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com2tag:blogger.com,1999:blog-1180946282070400491.post-37570176301067815502016-02-17T19:51:00.000-08:002016-02-17T19:51:00.627-08:00Will it be a House or a Home?
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<div class="MsoNormal">
HGTV has single handedly made the IDEA of buying a house an adventure.
As well as making the phrase “something to consider” my least favorite saying
in the English language. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Watching <i style="mso-bidi-font-style: normal;">House Hunters</i>
or <i style="mso-bidi-font-style: normal;">Fixer Upper</i> helps us dream of an
updated life full of Shiplap and open concepts. Yet, there is big piece missing
in each of these shows. What are the neighbors like? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
No matter the budget you cannot buy your neighbors. $300,000
might not get marble countertops but your neighbors might be your future
besties. Whereas, a million dollar budget gets you a room dedicated solely to
wrapping gifts but your neighbors are boring. Neighbors are the one element in
buying a house that can truly make your house a home.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When we made the decision to move from the city I was ready
for the ‘burbs. Third floor walk up with no elevator plus two kids equals time
for a backyard. So we started the hunt. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
House hunting is way cooler with a soft voiceover and cut
away shots than it is in real life. Wide angle lenses do to houses what Photoshop
does to magazines. It hook’s ya then disappoints ya when you see the real
thing. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thus we began the next step of narrowing down our suburbs
and putting together our wish list. While my craft room (I don’t craft but in
my mind I do) was pushed further down the list the idea of a good community was
at the top. With each house we looked my nerves started to grow. I could not
understand why I was so nervous. According to HGTV this should be an exciting journey
with lots to consider but it was scary for me. Why?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then it hit me as I was looking at the website of a potential
school. This would be the first time we would be introducing JD to people who
did not know us prior to meeting JD. Up to this point, everyone who had met JD
pretty much knew of JD before he was born. JD was just another Gawel kid <span style="mso-spacerun: yes;"> </span>. . . not a kid in a wheel chair, not a
kid who is tube fed and not a kid with special needs. Just a Gawel boy. But now
we would be going into an environment where people will “see” JD before they got
to “know” JD . . . and that terrified me.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After 9 months of living with my parents, 9 months of
searching, and two months of renovations we moved into our house when I was 37
weeks pregnant with Kaitlyn. <i style="mso-bidi-font-style: normal;">Sidebar: the
above-mentioned situation is not recommended.</i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Nate started meeting the neighbors first as he would go to
the house in the morning before work to help with the reno. Everyday he would
come back and tell me a bit more about the people on the block. And everyday I
would wonder “what will they say when they meet JD.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I struggle when introducing JD and having a desire to
immediately answer the unasked questions hanging over the conversation. I want
them to understand JD before they judge just based on the “book cover.” The
prospect of meeting the neighbors frightened me as I did not know how to weave
JD into the conversation. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Do not get me wrong. I love talking about JD. I love opening
people’s minds to this whole world that you don’t know exists until you are
involuntarily thrown in. I love people asking questions and inquiring about JD
and everything that goes along with him. But how do I get strangers to understand
that without making it awkward?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Approach #1</b></div>
<div class="MsoNormal">
“Hi, are you the new neighbors on the block”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“Yes, we are. My middle son has Wolf-Hirschhorn Syndrome,
which is super rare and leads to medical complexities and global delays. He
does not walk or talk and he eats via tube in his stomach. Ask me any questions
you want . . . . oh and my name is Jen.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
To which I expect the neighbors to say, “your kids seem
great but you are super weird.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Approach #2</b></div>
<div class="MsoNormal">
Act normal and get over myself.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Luckily for my neighbors (and our family), I chose Approach
#2. And it worked! Yay! JD has been integrated into our block seamlessly with
each family really embracing him with open arms.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One neighbor is JD’s Cubs buddy. JD is the first person he says
hi to before he launches into his analysis of the Cubs game. When JD is not
discussing the Cubs, he is answering questions about school and girlfriends
from the neighbor's wife. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Another family has 3 girls who include JD in everything they
do. If they are playing secret spy with Connor, they make JD the General who
gives them the orders running back to ask him for their next mission. </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW6F7awynKmw6DAm2aRJaTvO16cE02fccCiqQA812Dn07NlUxVo2HdWsW3xVI2Xu7KRcjE3t9pzauhL-3YeEhk6Siyfgb-WKBzmVmYE3eN2iH3bg3sYXtNK0FVUgGofgt_GT-693ZYSzI/s1600/IMG_6660.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW6F7awynKmw6DAm2aRJaTvO16cE02fccCiqQA812Dn07NlUxVo2HdWsW3xVI2Xu7KRcjE3t9pzauhL-3YeEhk6Siyfgb-WKBzmVmYE3eN2iH3bg3sYXtNK0FVUgGofgt_GT-693ZYSzI/s400/IMG_6660.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Hey mom, can JD stay outside with us while we talk?" Always, always, always</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Or there is the time at the 4<sup>th</sup> of July party I
was holding JD as he slept unable to indulge in the feast. As our big, soft-spoken
neighbor finished his meal he said “okay, I’m done, I’ll take him so you can
eat.” Wait, what? No one ever asks to hold JD (nor do I expect them to).<span style="mso-spacerun: yes;"> </span>But the fact he offered left my eyes a
little watery.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Or the neighbor whose kids are a bit older and she gave me her
cell the first time I met her so if I ever need to run to pick up Connor and
don’t want to take JD out in the cold she will run over and sit with him.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Or the little 2 year old boy down the street who thinks the
world of JD because he has the coolest wheel chair and watches with envy as JD
rides the bus to school everyday. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And it’s not just the block but the whole community. JD’s
teachers tell me how people are always saying hi to him in the hallways “and we
have no idea who these people are but they all know JD.” It makes my eyes
watery again to think about. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s very easy to pass over JD because he does not give the
same feedback you expect from kids his age. Yet, everyone still says hi and
asks about his day. Everyone makes eye contact and complements his clothes (the
fashionable 9-year-old next door cannot talk enough about JD’s clothes and shoes or his
super cool hearing aids). Everyone makes sure he is part of the group. And
everyone treats him the same. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Some people wish their child with special needs was more
like other kids and not so different. For me that is a fruitless wish. I don’t
blame them but that’s not me. My wish is that people treat JD the same as other
kids. Adults talk to babies and toddlers who do not respond so why not include
JD in that mix of kids. Hell, there are plenty of teenagers who don’t respond
when you talk to them. What’s the difference?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After nearly two years in this house we have made great
friends (I have not even told you about the girls night where all the ladies on
the street stayed out until 2am on a Thursday) and built a great community. Our
house started out as our “10-year house” until we upgraded to something bigger
and better. But at this point no matter how big our budget gets (we did not win
the billion dollar Power Ball) it will be hard to find a better HOME then we
have right now.</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtk3YE2Bt3LfciMpAgIaYzm-H7-iF5t9yI1jHvu64MaD8AhHOhsYbuwAltB7rO9Dndhm0YnMQSf5rzNdAg20F82NuRPPHw4mNzuHVq24rEUcNmKHWTu87eN98n-tfU5hCbD8Tc4OB6r1U/s1600/IMG_6404.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtk3YE2Bt3LfciMpAgIaYzm-H7-iF5t9yI1jHvu64MaD8AhHOhsYbuwAltB7rO9Dndhm0YnMQSf5rzNdAg20F82NuRPPHw4mNzuHVq24rEUcNmKHWTu87eN98n-tfU5hCbD8Tc4OB6r1U/s400/IMG_6404.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He loves his brother soooo much</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8WCXbgGUD-DOYjfsGpV8HSyd2SakkSsoLvr77ebAzaWwpyB6QVTSulM2OtqnOTg0iz7CJu9LznFgho35D_K6pQUfViCzO8oc-6F-R3QXm-urr-Lpe7Xf75apadvjGiI0qWQ3kJOmeq9s/s1600/IMG_6475.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8WCXbgGUD-DOYjfsGpV8HSyd2SakkSsoLvr77ebAzaWwpyB6QVTSulM2OtqnOTg0iz7CJu9LznFgho35D_K6pQUfViCzO8oc-6F-R3QXm-urr-Lpe7Xf75apadvjGiI0qWQ3kJOmeq9s/s400/IMG_6475.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I promise I do not ask them to pose they just do that</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ_wBS7RspKovs7Gt5qs8omHVGn8z-3XTsGJKAXEDflPDqUY4hlf9YN5HqW9co1kem12DUpHbtjmMZUEoOBYSQFHujn5pxzZDVbJNiOXqjdUz-e3vqJURTq9kz1c3VfnbQCEOdKOV-0NU/s1600/IMG_6480.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ_wBS7RspKovs7Gt5qs8omHVGn8z-3XTsGJKAXEDflPDqUY4hlf9YN5HqW9co1kem12DUpHbtjmMZUEoOBYSQFHujn5pxzZDVbJNiOXqjdUz-e3vqJURTq9kz1c3VfnbQCEOdKOV-0NU/s400/IMG_6480.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He always wants to push his brother</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOtrdrVzdOFU0RGrO8k6Hu-Se0UGVzqowE73CDYMLoA4g0l_wiD35Y6k8Hrv359YJumJB_QOKi339Zyq_eVh6tGiIn_GkZ57-DdQPhMetCzp5QPf6xkC7a7jt05zIYXJDR5ePolhry7No/s1600/IMG_6523.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOtrdrVzdOFU0RGrO8k6Hu-Se0UGVzqowE73CDYMLoA4g0l_wiD35Y6k8Hrv359YJumJB_QOKi339Zyq_eVh6tGiIn_GkZ57-DdQPhMetCzp5QPf6xkC7a7jt05zIYXJDR5ePolhry7No/s400/IMG_6523.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">These are not the Gawel kids, these are secret agents</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Qr5rDLAbnvqqPRgZepiKkT3zOv6p-tzm3__Q9y3hmOJ4tMiIcuBvyGxq_-uvXBc3MT-7OKMpuG79z20Goz1p5qdq58nbktNgK38Bd9mUxgXUxW5U_9aPD5AAIly79VkExL_7mfiG0jA/s1600/IMG_9087.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Qr5rDLAbnvqqPRgZepiKkT3zOv6p-tzm3__Q9y3hmOJ4tMiIcuBvyGxq_-uvXBc3MT-7OKMpuG79z20Goz1p5qdq58nbktNgK38Bd9mUxgXUxW5U_9aPD5AAIly79VkExL_7mfiG0jA/s400/IMG_9087.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our neighbors had a pumpkin craving party for the whole block and the kids love it!</td></tr>
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Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com2tag:blogger.com,1999:blog-1180946282070400491.post-9709477857930443872015-05-29T19:30:00.001-07:002015-05-29T19:30:59.628-07:00Take Me Out To The BaaaaaaallllGammmmme!<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
"Take me out to the ball game....take me out to the
crowd!" These are words I sang many times at Cub's games while Jen
and I lived our childless life in the city. Even after kids we were lucky
enough to take JD and Connor to a game and meet, then Cub David DeJesus, during
warm-ups.<span style="mso-spacerun: yes;"> </span>Jen and I often talk about how
exciting it will be to watch Connor play sports as he grows while having JD
with us cheering him on.<span style="mso-spacerun: yes;"> </span>Same with JD
attending Kaitlyn’s events to support her athletic adventures. However, In all
honestly, I never really let myself picture JD playing any sports because…well,
I just could not picture it.<span style="mso-spacerun: yes;"> </span>But all
that changed on Friday.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
JD has been attending school now for a few weeks.<span style="mso-spacerun: yes;"> </span>As Jen wrote in the last post, JD has been
thriving and loving it.<span style="mso-spacerun: yes;"> </span>He comes home
happy, exhausted and most times asleep from the bus ride.<span style="mso-spacerun: yes;"> </span>Teachers give such raving reviews and you can
really feel their love for him. However, that is all for another post.<span style="mso-spacerun: yes;"> </span>This is about my realization that I have been
limiting my visions of what JD can enjoy while growing up.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Last Friday, I took off from work and drove with Jen down to
the baseball diamond with the Kaitlyn and Connor meeting up with the
grandparents. JD had a large cheering section. We walked around meeting other
parents and talking to his teachers as we waited for another the other school to
arrive to battle JD “Stretch” Gawel’s Fairwood Frogs! I found myself wandering
around with Connor before the game, not because I was bored (the game started
almost an hour late) but because I found myself getting anxious.<span style="mso-spacerun: yes;"> </span>Not the “before a big presentation” anxiety
or the “right before one of his surgeries” worry…but the “oh man, I hope he is
ready for the game” excitement.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLl1nKMHjVLF2LDcoCYCIQ-iIYcOYKku2B-bCFjtLqy7didrGKKvMVDd7Ct2Lzqv-CyyvtntmDAy9LflUGIR5GqQut-w9wR71rZZhw8_eQ8Bmb3QiQKNdvhY4N9qejNuvKGmFFygBFo-g/s1600/IMG_4105.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLl1nKMHjVLF2LDcoCYCIQ-iIYcOYKku2B-bCFjtLqy7didrGKKvMVDd7Ct2Lzqv-CyyvtntmDAy9LflUGIR5GqQut-w9wR71rZZhw8_eQ8Bmb3QiQKNdvhY4N9qejNuvKGmFFygBFo-g/s400/IMG_4105.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">JD's cheering section</td></tr>
</tbody></table>
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Before any real baseball game begins, there is the National
Anthem! This game was no different. Sitting out on the diamond with one of his
classmates, was JD with the American Flag while a recording of LeAnn Rimes
belted over the speakers.<span style="mso-spacerun: yes;"> </span>While her
voice was pre-recorded and overly produced (Jen prefers the Whitney Houston or
Carrie Underwood versions) our emotions were pure and happening in real-time.<span style="mso-spacerun: yes;"> </span>I was proud, VERY proud.<span style="mso-spacerun: yes;"> </span>There sat JD, the center of everyone’s
attention, just hanging out waiting for the game to start not realizing how
many people were there believing in him.</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-EChdMAfFTGw/VWSUKGDNh0I/AAAAAAAAExs/rZsCtTLQUlA/s1600/baseball1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="http://1.bp.blogspot.com/-EChdMAfFTGw/VWSUKGDNh0I/AAAAAAAAExs/rZsCtTLQUlA/s400/baseball1.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">JD out for the National Anthem!</td></tr>
</tbody></table>
<div class="MsoNormal">
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinyHGFK5vaGWg9VhQ4l5snuvfCgPIrgJrckaqVmkU5A-b02sUb73ePj0MTvKWCTfewSzpJLh6fpJrapV6kbn2e3uTzKGHHM07xGd704XLG1zry9uZqp05VamncY4mX3mFZl21pDtUPOZE/s1600/IMG_4110.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinyHGFK5vaGWg9VhQ4l5snuvfCgPIrgJrckaqVmkU5A-b02sUb73ePj0MTvKWCTfewSzpJLh6fpJrapV6kbn2e3uTzKGHHM07xGd704XLG1zry9uZqp05VamncY4mX3mFZl21pDtUPOZE/s400/IMG_4110.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fairwood Frogs Line-Up</td></tr>
</tbody></table>
<br />
After the Anthem I paced back and forth waiting for JD to
bat.<span style="mso-spacerun: yes;"> </span>Yes, one of his teachers would
physically swing the bat.<span style="mso-spacerun: yes;"> </span>Yes, one of
his teachers would be his legs and push him around the bases.<span style="mso-spacerun: yes;"> </span>But nothing could lessen the amount of pride
and love I had for JD at that moment. Did I mention he hit a home run!<span style="mso-spacerun: yes;"> </span>The rest of the game flew by and we enjoyed a
quick picnic afterwards.<span style="mso-spacerun: yes;"> </span>Nothing else
really mattered except Jen and I feel JD really had a good time. I mean a
REALLY great time.<span style="mso-spacerun: yes;"> </span>There were many
moments of smiles and he never coughed or whined once.</div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-DaDdLb_xY2k/VWSUUgQbsPI/AAAAAAAAEx4/VyyQ_uf3HJA/s1600/baseball3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="http://2.bp.blogspot.com/-DaDdLb_xY2k/VWSUUgQbsPI/AAAAAAAAEx4/VyyQ_uf3HJA/s400/baseball3.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Getting Pumped for the Game!</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-0BJ1naYL1EQ/VWSUUWWordI/AAAAAAAAEx0/9Os_BCpyLv4/s1600/baseball2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="http://2.bp.blogspot.com/-0BJ1naYL1EQ/VWSUUWWordI/AAAAAAAAEx0/9Os_BCpyLv4/s400/baseball2.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">About to go to Bat</td></tr>
</tbody></table>
<div class="MsoNormal">
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmGU6Mj5CgVxiQlw3BLJ4a3K8HmO8Cvoegz4w7dYxfgSKYS24SlcK99avWWmtPAqINJ1RYzb6ghcGETiEI238xcoHvA4B6I6_VXzQUZh2iL2ATgJ-I38LtO0BIEEPGsPmo4G0EwCRVXn8/s1600/IMG_4116.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmGU6Mj5CgVxiQlw3BLJ4a3K8HmO8Cvoegz4w7dYxfgSKYS24SlcK99avWWmtPAqINJ1RYzb6ghcGETiEI238xcoHvA4B6I6_VXzQUZh2iL2ATgJ-I38LtO0BIEEPGsPmo4G0EwCRVXn8/s400/IMG_4116.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Calling his shot</td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-Fg_uTsiM7-TfRP8pbkWE-J6SUCcEdKWJJy0wwkG4lBss8m55uhmG79YdSD3qSdNSGrzVB4qLmqP4r1lidbQnKahjzb9-3NuRdb6sxGfEHCUEhLZM5tHUD3KQkjdsQS72xP40ixI23HQ/s1600/IMG_8739.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-Fg_uTsiM7-TfRP8pbkWE-J6SUCcEdKWJJy0wwkG4lBss8m55uhmG79YdSD3qSdNSGrzVB4qLmqP4r1lidbQnKahjzb9-3NuRdb6sxGfEHCUEhLZM5tHUD3KQkjdsQS72xP40ixI23HQ/s400/IMG_8739.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rounding first</td></tr>
</tbody></table>
<br /></div>
<div class="MsoNormal">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTGlfTdO5GBL7yVxNahXcvS727b1CG06_Jsun76ZtA1R2e4zY9Wz4ThOpM_yiWUBNZSrc9nOPiYqEbPYWyl44g1FhwbMRx7DGjUk6FRheIy91ymNXwE_2kpjdJxde9cx663RdndEW_jgk/s1600/IMG_4126.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTGlfTdO5GBL7yVxNahXcvS727b1CG06_Jsun76ZtA1R2e4zY9Wz4ThOpM_yiWUBNZSrc9nOPiYqEbPYWyl44g1FhwbMRx7DGjUk6FRheIy91ymNXwE_2kpjdJxde9cx663RdndEW_jgk/s400/IMG_4126.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Proud family (minus Kaitlyn who was sleeping) of the MVP</td></tr>
</tbody></table>
While I am sure JD learned something valuable that day…like
which way to go around the bases, I learned that I have been looking down a
narrow tunnel of what I can imagine JD doing.<span style="mso-spacerun: yes;">
</span>I have always been thinking about one day forward, will he learn to
communicate through a switch, can he say yes/no, and will he ever sit up on his
own?<span style="mso-spacerun: yes;"> </span>I now realize I need to think about
JD in a different way as well.<span style="mso-spacerun: yes;"> </span>Will he
like baseball or soccer?<span style="mso-spacerun: yes;"> </span>Will he enjoy
musicals or plays?<span style="mso-spacerun: yes;"> </span>What will he look
like in a graduation gown?<span style="mso-spacerun: yes;"> </span>Will he want
to play video games with his friends or just hang around outside talking about
who knows what? JD is more than a child that needs our support and extra
care.<span style="mso-spacerun: yes;"> </span>He is a child, a child who wants
to hang out and do kid things.</div>
<div class="MsoNormal">
“For its root, root, root for J…D…”</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-brT1s2TSP-A/VWSUtY19RNI/AAAAAAAAEyE/8VMI8rk5oWg/s1600/hanging%2Bout.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="http://2.bp.blogspot.com/-brT1s2TSP-A/VWSUtY19RNI/AAAAAAAAEyE/8VMI8rk5oWg/s400/hanging%2Bout.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Resting after the game.</td></tr>
</tbody></table>
NateGhttp://www.blogger.com/profile/12985817527057911041noreply@blogger.com6tag:blogger.com,1999:blog-1180946282070400491.post-85270437466105004382015-04-07T20:32:00.001-07:002015-04-07T20:32:23.258-07:00School Boy
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<br />
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><u>August 2012</u></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“Early intervention makes such a increased difference in
medically complex and delayed kids.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“You will need to make sure you have early invention for JD
from birth.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“Kids who have early intervention do much better in school.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After discovering JD’s diagnosis friends whom have kids with
special needs, or friends who are therapists/specialists, continued to talk about
the importance of early intervention. Sure, I had heard people throw around how
beneficial early intervention was for kiddos.<span style="mso-spacerun: yes;"> </span>I assumed as parents, Nate and I would intervene early as
well. Duh, why wouldn’t we start working with him as soon as we could?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Turns out as I walked around touting how we, of course,
would “do” early intervention I knew nothing about what I was saying.<span style="mso-spacerun: yes;"> </span>As I discussed <i style="mso-bidi-font-style: normal;">early intervention</i> others discussed <i style="mso-bidi-font-style: normal;">Early Intervention</i> . . . notice the difference? Lowercase ‘e’ and
lowercase ‘i’ versus capital ‘E’ and capital ‘I.’ Oops.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As JD was being discharged from the hospital they go over a
lot of paperwork and one piece discussed the next steps for Early Intervention
(capital ‘E’ and capital ‘I’). “Oh so, that’s like an actual thing?” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
E(e)arly I(i)ntervention to me meant as parents we needed to
intervene early in JD’s development to ensure we could provide him the tools to
grow and progress both mentally and physically. However, Early Intervention is
actually part of a state run program to ensure children from birth to three
with diagnosed disabilities or developmental delays receive support to maximize
development. Basically, they offer services such as a variety of therapies for
kids who need extra help. Who knew?!?! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A week of being home brought letters, phone calls, and lots
of information that I did not want to read. So in August of 2012 I cleaned the
condo, bought fresh flowers, and actually did my hair for our first meeting
with our Early Intervention (or EI as the in-crowd calls it) coordinator Holly.
To spare you the details here’s the gist:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Step 1</b>: <b style="mso-bidi-font-weight: normal;">Meet with you assigned coordinator to
assess if your child qualifies for EI.</b> </div>
<div class="MsoNormal">
With JD’s diagnosis he automatically qualifies then you add
his cleft palette, clubfoot, ASD (hole in his heart), lack of oral eating, it
goes on and on and on . . . and JD becomes the top candidate for EI. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Looking back I never realized how I would go back to this
moment many times as it was the first time outside of the hospital I would be
asked to detail all of JD’s long history for his short 4 months of life. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Step 2: Meet with EI
coordinator and four different therapists (each specializing in their own
field) to evaluate which therapies JD should receive. </b></div>
<div class="MsoNormal">
This is a very strange step as 5 strangers walk into your
home to tell you what your child can and cannot do. Some parents take this step
very hard but for me it was more confusing. We had been home for less than a
month still adjusting to life with two kids and these five strangers were
talking about the next 3 years of our lives. They spoke as though I should
understand what they were saying and they spoke to each other like it was all
business.<span style="mso-spacerun: yes;"> </span>Shame on me as I sat
their smiling and nodding along with the 5 strangers when my head was scrolling
with questions. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">Coordinator:</i> “PT
once a week, OT once a week, no need for Developmental just yet and let’s just
start Speech at 2x a month. Do you have any more goals? Anything else you think
we should add? What do you think mom?”</div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">What I actually said</i>:
“No, sounds great.” </div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">What I was thinking
and should have said</i>: “Huh?”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thus began our journey with EI.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Step 3: Receive phone
calls from 3 new strangers trying to set up time to meet each week for the next
three years.</b></div>
<div class="MsoNormal">
Confession . . . I took longer than normal to get back to
the new therapists. Everything happens all at once and your life as a weekly <i style="mso-bidi-font-style: normal;">Therapy Mom</i> starts very quickly.<span style="mso-spacerun: yes;"> </span>Consequently, I stalled. While I
understood there was no way around being a <i style="mso-bidi-font-style: normal;">Therapy
Mom</i> I was not yet ready to open the floodgates.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m not sure when I finally worked my way up to our first
therapy appointment but it was not as hard as I thought. EI therapy is similar
to running a long distance, the first time you are nervous, not sure of your
abilities, not sure how far you will make, wondering if you need to stop . . .I
had no doubt JD would perform like a rockstar but what about me? After the
first therapy session it just got easier. I will spare you the details of 3
years of hour-long therapies anywhere from 1 to 5 times a week. The EI
therapist slowly became more than just a routine; they became part of the
family. </div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6_mf5OcOOWaPTlgibvW8JU-g50G_JcfGcW3arQpQuMcHvk6QLvrkNNcjIwiZLB8MBbLoqn6sI5YyYiXNoe1FblvIpek05Ijf8_orwHFN5AtGTaxc9eE9aL7uWAxb5_7wIblBOxWsA4T8/s1600/IMG_2506.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6_mf5OcOOWaPTlgibvW8JU-g50G_JcfGcW3arQpQuMcHvk6QLvrkNNcjIwiZLB8MBbLoqn6sI5YyYiXNoe1FblvIpek05Ijf8_orwHFN5AtGTaxc9eE9aL7uWAxb5_7wIblBOxWsA4T8/s1600/IMG_2506.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sitting practice at 2.5 years</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl4eMYMlFA-bFAskMcgMD-be3-W3IVUdDfifDRYsvV7yI5GAAaDMBeunFPgn1ql09YG53ovM7Zg6mzsVvFr-4N80BSAObjwaqHXhzXlfxdn5K6e5WdeOPhgSyZCUa7aUdOVrgv26RqKxs/s1600/IMG_3535.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl4eMYMlFA-bFAskMcgMD-be3-W3IVUdDfifDRYsvV7yI5GAAaDMBeunFPgn1ql09YG53ovM7Zg6mzsVvFr-4N80BSAObjwaqHXhzXlfxdn5K6e5WdeOPhgSyZCUa7aUdOVrgv26RqKxs/s1600/IMG_3535.JPG" height="480" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Last Speech Therapy session with the fabulous Katherine - almost 3 years old</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH_6g7uwZRtgqqHVi0FFfbtcZvxOnjv5csDcaceKafaGrSQ1GQX6AKgjcIAJD84Z6Rs6QmgdOepPgjpPqADR5tJWlS2PogFS3ygS6-mxnWk-Ctjzo7Kzx-DY8n4XIERCn6jL5TXm9uAHA/s1600/IMG_3521.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH_6g7uwZRtgqqHVi0FFfbtcZvxOnjv5csDcaceKafaGrSQ1GQX6AKgjcIAJD84Z6Rs6QmgdOepPgjpPqADR5tJWlS2PogFS3ygS6-mxnWk-Ctjzo7Kzx-DY8n4XIERCn6jL5TXm9uAHA/s1600/IMG_3521.JPG" height="480" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Last Occupational Therapy session with the amazing Kara</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJUW3azeTQvoPOp9Z8LcMKQVZ1gsW0VRp9DXf4ymkSQA12N5vtLRLUUtIap26x0pLQqVStvM8bd7571Kt2xGCoyWvp8CiWP1YZhSOgwTp9M1ejKCeNaHTLA-0AKt9FK01AlEmhSsMQtgM/s1600/IMG_3518.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJUW3azeTQvoPOp9Z8LcMKQVZ1gsW0VRp9DXf4ymkSQA12N5vtLRLUUtIap26x0pLQqVStvM8bd7571Kt2xGCoyWvp8CiWP1YZhSOgwTp9M1ejKCeNaHTLA-0AKt9FK01AlEmhSsMQtgM/s1600/IMG_3518.JPG" height="480" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">JD coloring for the first time and loving it</td></tr>
</tbody></table>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
*************</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><u>March 2015</u></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As JD is just two weeks away from aging out of the EI
program I am holding on with white knuckles to that title of Therapy Mom. After
11 different therapist, 500+ hours of therapy, 15 different pieces of
equipment, 50+ developmental toys, 15 group meetings, 10 different evaluations,
100s of medical terms and daily practice <span style="mso-spacerun: yes;"> </span>. . . I am a PROUD Therapy Mom. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Just when I get the hang of it, just when I love the
routine, just when I think we have the absolute BEST team in place for JD
everything stops. As of April 2, 2015 I will no longer be a Therapy Mom as I transition
into School Mom. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Yep, the Early Intervention program starts at birth through
their 3<sup>rd</sup> birthday. On April 1<sup>st</sup> JD will be in EI on
April 2 he will officially age out of in-home therapy and he will start to
attend school. My baby who has never been with anyone besides family (and
Therapists) will attend a full day preschool program Monday – Friday. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Back in November, Nate and I met with the EI social worker
to begin the transition process from EI to school. Turns out our school
district absolutely ROCKS at this Special Ed thing. As this lovely woman sat at
our table explaining the potential programs for JD, Nate and I did everything
we could not to shed a tear. Slowly this very large weight lifted off my
shoulders as I heard her say “you guys are in the best school district for JD.”
Interesting, I did not realize how heavy this boulder was on my shoulders until
it was gone. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As with everything we do for JD there are a few steps. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Step 1: Referral from
EI to the school district</b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Step 2: Evaluation of
JD’s abilities</b></div>
<div class="MsoNormal">
The evaluation phase is based on which services JD is
currently receiving through EI. Some kids might have one or two specialists in
the evaluation but JD never likes to be outdone so we walked into a room of
eight different specialists with more filtering in throughout our meeting.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A peak inside my heart will show that with each new
situation my heart beats a little faster.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What is their first impression? <i style="mso-bidi-font-style: normal;">Ba-bum </i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What do people think about him? <i style="mso-bidi-font-style: normal;">Ba-bum, ba-bum</i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Will they treat him the same way the same way they treat
everyone else? <i style="mso-bidi-font-style: normal;">Ba-bum, ba-bum, ba-bum</i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Will they judge his abilities? <i style="mso-bidi-font-style: normal;">Ba-bum, ba-bum, ba-bum, ba-bum</i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Will they know how to work with him to get his best potential?
<i style="mso-bidi-font-style: normal;">Ba-bum, ba-bum, ba-bum, ba-bum, ba-bum</i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
With each thought, my heart gets faster and stronger. But
the one that makes my heart hammer . . . makes my heart rate skyrocket . . .
makes my heart louder than Big Hair Band drum solo is . . .</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Will they like him? Will they give him a chance in spite of
his global delays? Will they treat with respect the way everyone treats Connor
and Kaitlyn? <i style="mso-bidi-font-style: normal;">BA-BUM,BA-BUM,BA-BUM,BA-BUM,BA-BUM,BA-BUM
</i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Luckily, we have had nothing but support from family and
friends but what about new people? Will they give him a chance before they
judge? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I try not to be an anxious person. I enjoy new environments
and meeting new people and . . . surprise . . . I am very social. Chatty if you
will. But when it comes to bringing JD into a new place or introducing him to
new people I get very protective. VERY PROTECTIVE. And I worry. A LOT! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Walking into the brightly colored room on a sunny March day pushing
my handsome blonde hair blue-eyed boy in his matte blue wheel chair wearing his
maroon football sweater with J. Crew rolled sleeves, jeans, and plaid shoes my
heart was pounding out of my chest. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I scan the room of the 4 therapist, 1 teacher, 1 social
worker, 1 nurse, and 2 directors searching something. <span style="mso-spacerun: yes;"> </span>Searching for a flicker, a gaze, or a
flash alerting me to the moment they realize JD is different. More different
than most of the kids they work with. I focus on the eyes as the eyes tell it
all. People can control the expressions on their face easily but it’s the eyes that
betray the emotions. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I scanned, I searched, I looked, and I judged assuming these
ladies would in turn judge right back. I<span style="mso-spacerun: yes;">
</span>. . . was . . . wrong!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The flicker I saw was a smile that reached the eyes because
they were excited to meet JD. The gaze I noticed was the complement of how
stylish JD was dressed. And the flash I witnessed was enthusiasm to start
working with JD. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
JD’s school evaluation was the beginning of what would a
very smooth EI to school transition. A process which is known to be difficult,
emotional, dreadful and full of fights was genuinely a very pleasant and
fulfilling experience for us. </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLiHXnEMRCh4ZO1JzueJwQC8e6D2QRKtxKbPzltj0vDl6r-9kVFcVVeHG19fI4hmb48SOxNvZeovtjREzsP4iuR-uaMFfu1kwhTIey9s9dQiZg5VkASHMyhXCpP-r2eXiUJ4y3FgoR8Vs/s1600/IMG_3179.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLiHXnEMRCh4ZO1JzueJwQC8e6D2QRKtxKbPzltj0vDl6r-9kVFcVVeHG19fI4hmb48SOxNvZeovtjREzsP4iuR-uaMFfu1kwhTIey9s9dQiZg5VkASHMyhXCpP-r2eXiUJ4y3FgoR8Vs/s1600/IMG_3179.JPG" height="480" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Charming the ladies at his evaluation</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH8shpS9DW3dS-YIrDvzKgnwD8OnZJLCmLrWVE8keI0TwwLHQtmkTs1wdeK2Jc4Vhoum0rNwnyP-jQkhxYa98ZhnVRlS5z5l-qhEBlLQ5LpmZijajEr6kT3mGeqjeAdev5hVi5aI-3hrs/s1600/IMG_3182.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH8shpS9DW3dS-YIrDvzKgnwD8OnZJLCmLrWVE8keI0TwwLHQtmkTs1wdeK2Jc4Vhoum0rNwnyP-jQkhxYa98ZhnVRlS5z5l-qhEBlLQ5LpmZijajEr6kT3mGeqjeAdev5hVi5aI-3hrs/s1600/IMG_3182.JPG" height="480" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The ladies charming JD</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
***********************</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><u>April 6, 2015,
8:22pm</u></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In 8 minutes I will begin packing my baby boy’s school bag.
Carefully running through my checklist to insure his bag is fully organized and
prepared for his first day of school. JD and I have already met his teachers,
therapists, and classmates but tomorrow he will be there all by himself. Nate
and I will drive him to school, walk him in, get him settled, and then walk out
without him. My stomach is in knots, my heart is pounding, and my mind is
spinning. JD will thrive in this environment and continue to look damn handsome
while showcasing his new abilities.</div>
<div class="MsoNormal">
Tomorrow will be a remarkable start to whole new chapter in
the Gawel family story. From a surprise prenatal diagnosis of a rare syndrome
very few doctors had heard of to a 3½ lb baby boy being delivered 4 weeks early
to 3½ months in the NICU to many, many, many more hospital stays to wondering
if he would make it to his 1<sup>st</sup> birthday to now heading off to school
as an adorable, healthy 3 year old boy. It has been a crazy wonderful ride and
we hope you continue this journey with us! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Check the next one off the Gawel Adventure List – James Douglas’
first day of school!!!!</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvrOjkzx9spxBVm7Eucft1PNgkzYYNb_RHAZ7L0uMUxJZX4d5t0fyPBd4_7IY3yG2TGf4jGr3gqQzivpg9K9i3oBXix7kR5Lil_ihfQxGTZTZlYrc1oUnEc6EkiXkDxM-19bLjN8Ge7ys/s1600/IMG_3448.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvrOjkzx9spxBVm7Eucft1PNgkzYYNb_RHAZ7L0uMUxJZX4d5t0fyPBd4_7IY3yG2TGf4jGr3gqQzivpg9K9i3oBXix7kR5Lil_ihfQxGTZTZlYrc1oUnEc6EkiXkDxM-19bLjN8Ge7ys/s1600/IMG_3448.JPG" height="480" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brothers! Connor loves his brother</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisi-yZ9iMvk60tUUSoGeE1GjwKXHY5C9muDMZkRh-E-TlA5aLKLowsEfwBRgz9EsCzjq83GEzW_Z6vMknNkdj2p4f-BktgvQSC77jK7xWYqiqNELZ5itd0R3ZBvVnUNAbZZFOxqI7xGWo/s1600/IMG_3566.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisi-yZ9iMvk60tUUSoGeE1GjwKXHY5C9muDMZkRh-E-TlA5aLKLowsEfwBRgz9EsCzjq83GEzW_Z6vMknNkdj2p4f-BktgvQSC77jK7xWYqiqNELZ5itd0R3ZBvVnUNAbZZFOxqI7xGWo/s1600/IMG_3566.jpg" height="640" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy 3rd Birthday to this kid with great hair</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmwKSfY0PJpBB7IfG8yFe5-w9_ByC90bN8-mwD-73e-xCSHyNF1Oe2TgcXzSBrSvjzf3or1D-0dPKF62odeSdBpaUgvH1BtZ7y9bfrRkLW7x9gpn3r0tLod4yZF5NQf-koe10ql4so7l4/s1600/Gawel-1028.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmwKSfY0PJpBB7IfG8yFe5-w9_ByC90bN8-mwD-73e-xCSHyNF1Oe2TgcXzSBrSvjzf3or1D-0dPKF62odeSdBpaUgvH1BtZ7y9bfrRkLW7x9gpn3r0tLod4yZF5NQf-koe10ql4so7l4/s1600/Gawel-1028.jpg" height="400" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The thinker</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com5tag:blogger.com,1999:blog-1180946282070400491.post-68718970460135489862014-09-05T13:50:00.000-07:002014-09-05T13:50:55.753-07:00Our Kids Have Heart
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<br />
<div class="MsoNormal">
On June 10<sup>th</sup> at 8:42am Nate and I were stunned to
hear the doctor say, “Congratulations, you have a DAUGHTER!” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
WHAT?!?! Tears started streaming down both of our beaming
faces as we heard the dominant cry of our new baby girl. After having two boys
we just assumed there was another in our future. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A girl completes the family. Kaitlyn Emma Gawel was pink,
loud, and strong. Like her mother, the girl was ready to eat as soon as she
arrived and spent the first hours of life eating and snuggling with mom and dad.</div>
<div class="MsoNormal">
<br /></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_6N6QXnsBMWPrgaOsikDtFEMdttKqNzB2vKuIyCyz2p5CbjFHJzHKBEdwRp6zxM_HYvTrDgYm-dNMCcXw9bWFreAWASAqMqXwEtghZgT_uFLVrMBLcjdQ-D8oiBf5ISeKyRgyByRqbuk/s1600/IMG_4748.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_6N6QXnsBMWPrgaOsikDtFEMdttKqNzB2vKuIyCyz2p5CbjFHJzHKBEdwRp6zxM_HYvTrDgYm-dNMCcXw9bWFreAWASAqMqXwEtghZgT_uFLVrMBLcjdQ-D8oiBf5ISeKyRgyByRqbuk/s1600/IMG_4748.JPG" height="480" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tiny and pink</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On June 13<sup>th</sup> at 11:45am Nate and I were stunned
to hear our pediatrician, Dr. D, say,<span style="mso-spacerun: yes;">
</span>“The NICU transport team will be coming to take Kaitlyn to the NICU to
prepare her for transfer to the Cardiac unit at Lurie’s next door.” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Tears were once again streaming down my face only this time
it was hysterical, ugly, tears that led to near hyperventilating. The tears
would not stop as I ONCE AGAIN watched the transport team wheel away my newborn
baby to Lurie Children’s Hospital.<span style="mso-spacerun: yes;">
</span>Seriously!!! It was happening again.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Let me back up . . .</b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Tuesday:</b></div>
<div class="MsoNormal">
A few hours after Kaitlyn’s birth as we cuddled our baby who
was NOT in the NICU (this was first for us) we gleefully called family and
friends to announce her arrival; one of the pediatricians from Dr. D’s office
stopped by to do a newborn examination. A very strong, pink, healthy girl is
what she saw . . .but when she listened to her heart she heard something
different. Heart murmurs can be common in newborns as they transition to real
life from womb life. However, when the doctor heard not one but TWO heart
murmurs in Kaitlyn she made a note. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At first, no one was overly concerned but they wanted to
make sure everyone was aware of the discovery. Nate and I were living in
blissful denial. Yada, yada, yada they heard a few murmurs big deal. We have a
healthy little girl in our arms and everyone keeps saying she is strong.
Fingers in ears when discussing the murmurs. Don’t want to hear it!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Wednesday:</b></div>
<div class="MsoNormal">
The following day, they ordered an Echo to get a better idea
of what was causing the murmurs. Nate answered the call when the doctor told
him they found a VSD, a coarctation of the aorta, and bicuspid valve. At this
point, Nate and I were still living in blissful denial as they told us they
would continue to monitor her but nothing needed to be done at this time.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The coarctation of the aorta (co-arc) was the most
concerning of the three. A co-arc is a narrowing of the aorta, the large blood
vessel that branches off the heart and delivers oxygen-rich blood to the body.
When this occurs, the heart must pump harder to force blood through the narrow
part of the aorta. Basically it’s as though her heart is exercising all the
time working hard to get the blood to the body.<span style="mso-spacerun: yes;"> </span>While it can be serious if undetected, once it is diagnosed
treatment is usually very successful.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Thursday:</b></div>
<div class="MsoNormal">
Dr. D told us she would most likely need to get her
coarctation of the aorta fixed at some point. However, at this moment she is
doing very well and we will need to make an appointment for the cardiologist to
see her outpatient. Sweet, great, we’ll think about it later.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Friday:</b></div>
<div class="MsoNormal">
Blissful denial is one of the greatest assets a human can
use to extend inevitable sadness. Yet, when a sledgehammer breaks that blissful
denial wall the weight of reality is crushing.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After a follow-up echo, Dr. D called and asked to be put on
speaker.<span style="mso-spacerun: yes;"> </span>Hmmmm, this is
interesting.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Dr. D:</b> “The echo showed
the narrowing of the aorta is much smaller than originally thought. She will
need to have the co-arc repaired sooner rather than later. The NICU transport
team will be coming to take Kaitlyn to the NICU to prepare her for transfer to
the Cardiac floor at Lurie’s next door.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Me:</b> <i style="mso-bidi-font-style: normal;">I looked at Nate with puppy dog eyes, put my
hands on my head, and said</i> “WHAT, WHAT?????!!!!!”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Nate</b>: <i style="mso-bidi-font-style: normal;">Remaining very level headed</i> “So will she
be having surgery today or are they looking just to monitor her for a few
days?” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Dr. D</b>: “They will
need to monitor her when she gets over to Lurie’s but she will need surgery
with in the next few days. I just cannot believe your family is going through
this again. In my 12 years of practicing I have never had a family experience
as much as your family has in the past two years.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Knock, knock, knock .<span style="mso-spacerun: yes;">
</span>. . “they’re heeeerrrrreeeee.” And away my 3 day old baby girl went.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It was at that moment when it all came crashing down. Two
years of NICUs and doctors and tests and hospital stays and appointments and
nurses and medical terms and illnesses and surprise diagnosis and x-rays and
viruses and scary words and serious doctor talks and surgeries and blood labs
and breathing tubes and oxygen and a blenderized diet and development delays
and therapies and unclear outcomes and seizures and medicines and cardiac
appointments and MRIs and CT scans and much, much more . . . at that exact
moment it crushed me. I. Could. Not. Breathe!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I like to think of myself as a level headed mom that can handle
things without drama but this was the final Jenga piece removed to make it
crumble to the ground. It hurt. It <i style="mso-bidi-font-style: normal;">physically</i>
hurt! I remember watching a Sex in the City episode when the ladies went to the
Hamptons and Carrie ran into Big with his new 20-something wife. She ran away
only to throw up in the sand because she was in so much <i style="mso-bidi-font-style: normal;">physical</i> pain. Draaaaaama! I thought it was little dramatic because
how can something emotional cause such a physical response. Unfortunately, I
now know. While I did not get sick like Carrie my body shut down. My lungs felt
as though a boulder was placed on my chest and was slowly getting heavier. <span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Cheated, it was one of the only words I could get out of my
mouth. Cheated!!! I felt cheated. I was cheated out of Connor’s first 48 hours
of life as he was being “monitored” in the NICU. I was cheated out of JD’s
first 3½ months of life (and many more) as I could only hold him on a pillow
while he was attached to wires and monitors. And now, once again I was being
cheated out of walking out of the hospital with my baby girl. CHEATED!!! </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqcYf6c1b5qDy6YaOZHA_OcA8OJxsiasvPWNWq4xLc_J4nyqNjvutCNV-gdjLveO0Jgl6z8C5B1A92ih5rv0fpfLF7CU9fQYURSqprnahkMC0SjDp1yASRsIH1tSwYHdt4PD6JgfpF9So/s1600/IMG_4815.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqcYf6c1b5qDy6YaOZHA_OcA8OJxsiasvPWNWq4xLc_J4nyqNjvutCNV-gdjLveO0Jgl6z8C5B1A92ih5rv0fpfLF7CU9fQYURSqprnahkMC0SjDp1yASRsIH1tSwYHdt4PD6JgfpF9So/s1600/IMG_4815.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hooked up to monitors and wires is no fun for anyone</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Looking back on the day I can remember every feeling, every
smell, every word, every face, everything about the moments that moved so
slowed. As we crossed the bridge from Northwestern to Lurie’s to see our baby
girl I could not speak. I am surprised my legs actually worked as the
receptionist (we were not allowed to walk with the team over to Lurie’s we had
to walk on our own . . . oh and I did I mention I was 3 days post C-section)
told us “Baby Girl Gawel is in room 1514.” NOOOOOOOO, 10 months earlier we
spent 7 days in room 1512 after JD’s heart surgery how are we back here????</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
All eyes fell to us as we walked down the cardiac floor.
“They look so familiar” “Did I give them a tour of the floor?” “I think my
husband works with the dad” “I recognize them, I think I met them at my
friend’s party.” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
No, no, no, you don’t know us socially and Nate does not
work with your husband and we have never shared cocktails at a party. You remember
our son from 10 months ago . . . Large ASD, Open Heart surgery, Wolf-Hirschhorn
Syndrome . . . YES!!!!!!!! That’s it.<span style="mso-spacerun: yes;">
</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Honestly, almost every nurse and doctor mentioned how they
recognized us but could not place us until they heard JD’s name. Always wanted
to be VIP on a Hollywood red carpet but VIP status on a cardiac floor at a children’s
hospital is just not the same.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
All afternoon doctors and nurses came in and out of the room
to look, poke, listen, explain, and check on the newest Gawel baby. Not to toot
Kaitlyn’s horn or anything but we actually had doctors and nurses who came to
see her because they heard she was incredibly good looking. I’m not even making
that up. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Summer is a busy time for the cardiac floor so they were
struggling with finding a surgery date for Kaitlyn. We were transferred on a
Friday and would have to wait over the weekend to get a final date because “the
OR is very booked this week.” Normally, I would have taken this good news given
no one was in a rush to get her to the OR. Not a life-threatening situation.
However, 3 days post birth hormones had me raging that she was not on the top
of the cardiac team’s To-Do list. <span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our fabulous cardiologist knows us very well and asked “has
anyone told you the bottom line?” Nate and I looked at each other slowly,
“nooooo . . .” “Oh, well there is a zero mortality rate with this surgery.” I
would have been less shocked if he slapped me across the face. When have you
EVER heard a doctor use the word ZERO when discussing a potential surgery?!?
However, he was making a point, this is a bump in the road but it is small and
she will continue to be a very healthy and happy girl.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Ultimately, the procedure would be rather simple . . .
especially given during out stay a teenager on the other side of the floor
received a heart transplant which took the surgeons at least 8 hours, it put
things in perspective for this angry mom.<span style="mso-spacerun: yes;">
</span>The surgeons would not have to go into the front of the chest or stop
the heart for this surgery. In fact, they don’t’ go into the heart at all. They
are able to go in through the side reducing the scaring. It’s all child’s play
really, they go in cut out the co-arc, sew her aorta back together then close
her up. Whole process takes about 20 minutes. <i style="mso-bidi-font-style: normal;">Side note: this is NOT how it sounded to me at the time. Rather it
sounded more like “we will slice her open play around in her heart cut pieces
of her out then sew her up and hope for the best . . .you good with that?” </i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Given the incision would be under her left arm I was told she
still would be able to pull off a fabulous strapless wedding dress (or as my
bestie said “rock a triangle top bikini”) without worrying about a scar. I was also
assured she would still be able to become the Olympic volleyball player I was
so close to becoming <span style="mso-spacerun: yes;"> </span>(All-Conference
Honorable Mention in high school is pretty much just one step away from the
Olympics – she has pret-ty big shoes to fill). </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7wSQX86ShXy16iIWf9Gl2JoLLE7jl6qDUSFHDzjbEtb0mRFy7A1cnp9ZObz4vEsPjAaZ5npbagJemkWGpI8vhEt9kZR9K4l1srK5zBUoaGeJTNjy916mEJk0-Dx_GejU4u6YzwWxWgEs/s1600/Gawel-748+4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7wSQX86ShXy16iIWf9Gl2JoLLE7jl6qDUSFHDzjbEtb0mRFy7A1cnp9ZObz4vEsPjAaZ5npbagJemkWGpI8vhEt9kZR9K4l1srK5zBUoaGeJTNjy916mEJk0-Dx_GejU4u6YzwWxWgEs/s1600/Gawel-748+4.jpg" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She actually had a few incision issues which sent us back to the hospital for 2 days but the scar is still very small</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
That evening Nate stayed in the room with Kaitlyn while I
went to sleep back in my hospital room at Northwestern (the two hospitals are
connected so I was only a 5 minute walk away) because I could not be in the
room any longer. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Ugly, ugly, Claire Danes tears streamed down my face as I
crumbled to the floor when I walked back into my post delivery room. If I was
watching a movie and one of the characters sobbed uncontrollably the way I did
at that moment I would have thought the acting was frightful. I would never
believe someone to be so dramatic while alone in a room. But that is what I was
super dramatic (actually kinda embarrassed to admit it). How was I back in a
post birth hospital room WITHOUT a husband or a baby?!?!? </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1uDWZboHlUnVxaf2X6Fh1H2wzLfsieK7Nj2MLKn1MBaIPtTDOWH6wlLPmhyphenhyphen6ocxnqqS27LdyytNlV7R92hZizmgEw9jGbwKjjDNJylzYPPp-ATmXUIiDzZL0dfx0J92z_SHL83943y4s/s1600/IMG_7274.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1uDWZboHlUnVxaf2X6Fh1H2wzLfsieK7Nj2MLKn1MBaIPtTDOWH6wlLPmhyphenhyphen6ocxnqqS27LdyytNlV7R92hZizmgEw9jGbwKjjDNJylzYPPp-ATmXUIiDzZL0dfx0J92z_SHL83943y4s/s1600/IMG_7274.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Another Father's Day spent in the hospital</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The next morning I was a tiny bit better but I lost it as I
walked across the bridge only to see first time 7 month preggos happily
skipping to their Great Expectations class preparing for their perfect birth
and post birth where they will actually leave the hospital with a baby. Ugh! (<i style="mso-bidi-font-style: normal;">Slight disclaimer: most 7-month pregnant
women do not skip nor do they look overly happy but in my mind on that day they
sure were rubbing it in my face</i>).</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ll spare the details but the next few days were more of
the same, no word on the surgery date, more imaging needed, and lots of crying
from this mommy.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Finally, surgery was scheduled for Thursday (nearly a week
after we were transferred). Given I was nursing I could not go home but the
idea of sleeping on a recliner for weeks sounded horrible. Luckily this little organization
you may have heard of it, Ronald McDonald House, has 9 sleep rooms just two
floors down from the cardiac floor. I was given a room allowing me to sleep in
a bed for a few hours then run upstairs to feed Kaitlyn. Ironic after being on
the board at the Ronald McDonald House near Lurie Children’s for TEN years and
donating more money than I even know (given much was donated during the annual
Wine Tasting) I was now one of the families utilizing a Ronald McDonald House
room. Don’t worry this was not lost on me. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ll cut to the chase. Finally, on June 19<sup>th</sup>,
Nate and I sat in the same family room as we had 10 months earlier for JD’s
surgery while our 9 day old baby girl would be in the same OR with the same surgeon
hands operating on her heart. Surprisingly, by this time I was feeling much
better about the whole thing. Don’t get me wrong, I was still pretty pissed and
felt the whole situation was unfair but you just cannot go through life feeling
sorry for yourself.<span style="mso-spacerun: yes;"> </span>Laughing through
the tough times helps us get to the other side faster and stronger than
wallowing in self-sorrow. <i style="mso-bidi-font-style: normal;">Side note: I
know that is not how I handled the first few days in the hospital but you’ve
gotta cut me some slack.</i></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitm8zu56qYX8ZGc_z5jWCprVFiLvTeSuY2Fm0Z-77PRc97JUci5hP4aMy0FnB8TrUoGlXpLC4UjUfp8Uyi3TN_U11QJsinMD2PH3hyqHYQAOtGaLQyLtsUKcIPUMIyfhYEV54bL7S7iOQ/s1600/IMG_4877.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitm8zu56qYX8ZGc_z5jWCprVFiLvTeSuY2Fm0Z-77PRc97JUci5hP4aMy0FnB8TrUoGlXpLC4UjUfp8Uyi3TN_U11QJsinMD2PH3hyqHYQAOtGaLQyLtsUKcIPUMIyfhYEV54bL7S7iOQ/s1600/IMG_4877.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is long and boring mom</td></tr>
</tbody></table>
<div class="MsoNormal">
Over the past two years we have spent over 200 days at Lurie
Children’s Hospital with all our overnight stays and appointments. And yet,
that is nothing compared to some families. Given everything we have experienced
we still believe we are incredibly blessed. Three beautiful kids with unique
personalities that add to everyone’s life who are fortunate enough to meet
them. It was a tough first month of Kaitlyn’s life but I would not change it
for anything to have the family I have today. </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEJqg4mKZL6VxDgNY1Y8YqPBMJ5mdq7h62ozAOFxSY4PsT1YHjYMejDeld5RvBzSLsxsogIqOi_lg3_ciI5LwB01eMLjr_RLHZ6iLfzrQERCrO-obaL23DeWoRBljaXPo_3ERq4t6XFmY/s1600/Gawel-701.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEJqg4mKZL6VxDgNY1Y8YqPBMJ5mdq7h62ozAOFxSY4PsT1YHjYMejDeld5RvBzSLsxsogIqOi_lg3_ciI5LwB01eMLjr_RLHZ6iLfzrQERCrO-obaL23DeWoRBljaXPo_3ERq4t6XFmY/s1600/Gawel-701.jpg" height="266" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Very proud big brothers</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg88EtPOrep7mqDCMUmjgbqrO5N3pIC8npkiQb4K6n2b2-clzdrLbaPpgE_76HuKrzU3dStuNhJ1ICYNDNh346SF7fwxo7k9CFpCiyRR7HFtKxQXSn6MOcx5I_iUnfsGfyQEW7rzeBuXOc/s1600/Gawel-732+3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg88EtPOrep7mqDCMUmjgbqrO5N3pIC8npkiQb4K6n2b2-clzdrLbaPpgE_76HuKrzU3dStuNhJ1ICYNDNh346SF7fwxo7k9CFpCiyRR7HFtKxQXSn6MOcx5I_iUnfsGfyQEW7rzeBuXOc/s1600/Gawel-732+3.jpg" height="266" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Healthy little girl</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBlvCuzywoe2LD6rFL2gets9rhr4GzPbBOrQkLJkUD0qQHl2adKWuE4I2oORarFcFv1YyMyJ5TM0uO55XAMFDXsYtHYCpnrwhT3_LKfUASoDyxZY466qy7kMAMZTucyMe8ESeIi_nAJIE/s1600/IMG_0416.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBlvCuzywoe2LD6rFL2gets9rhr4GzPbBOrQkLJkUD0qQHl2adKWuE4I2oORarFcFv1YyMyJ5TM0uO55XAMFDXsYtHYCpnrwhT3_LKfUASoDyxZY466qy7kMAMZTucyMe8ESeIi_nAJIE/s1600/IMG_0416.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Life with three monsters</td></tr>
</tbody></table>
<br />
<div class="MsoNormal">
<br /></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-iID-FvU6CkbeAGHS0X6JpT4kBxTbSyfeOaBUg3INsDXr-aQ9zB2lBJWuWfTrTh-WEGv8tHT-q772TNw7CvVa6vFhgulL448F8BOFo2yBC4TTAIfik5jto7goCX3oS587MYluP9EI1qQ/s1600/IMG_0429.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-iID-FvU6CkbeAGHS0X6JpT4kBxTbSyfeOaBUg3INsDXr-aQ9zB2lBJWuWfTrTh-WEGv8tHT-q772TNw7CvVa6vFhgulL448F8BOFo2yBC4TTAIfik5jto7goCX3oS587MYluP9EI1qQ/s1600/IMG_0429.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Watch out boys she is a cutie</td></tr>
</tbody></table>
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjktCY-zhLZ6CjCLSUon5KOJbzWgVzsWtPKwOi5WV0SXq2ZOtDrirEPh9-1O8SoKdLXhxOk4V8Ha1bWZl-7dhEFjzDhA5TXKNbE3c8aovH5COPNfbpsnYEcV78cm7IVdkL5qc4DgJwc16s/s1600/IMG_0609.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjktCY-zhLZ6CjCLSUon5KOJbzWgVzsWtPKwOi5WV0SXq2ZOtDrirEPh9-1O8SoKdLXhxOk4V8Ha1bWZl-7dhEFjzDhA5TXKNbE3c8aovH5COPNfbpsnYEcV78cm7IVdkL5qc4DgJwc16s/s1600/IMG_0609.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yes, we have ANOTHER thumb sucker</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRrhmbMseJBMdaI8NQG48KGKy5M5LsiclAZnkaco7OEV59FW83UV3FZA9McMqYaVqarsfVh8RQHbqk9h2vOlgUYfXNi7jfE7UYJnIl0i9vi-uXLMg2ELaVC5bgUrzDr3UPRJXNnc5suS0/s1600/IMG_0101.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRrhmbMseJBMdaI8NQG48KGKy5M5LsiclAZnkaco7OEV59FW83UV3FZA9McMqYaVqarsfVh8RQHbqk9h2vOlgUYfXNi7jfE7UYJnIl0i9vi-uXLMg2ELaVC5bgUrzDr3UPRJXNnc5suS0/s1600/IMG_0101.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gotta do the super lame sticker pictures - 1 Month</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkd002rJy1Tt-L_tCoHa_DXZmpJLPgJxJ_PGMHwPVbGjUy6nh42Ri8INs8uSXEmehYnzyneb8cJy4988sWp0r_w2vIlrOPUksHSfuk0BR8VWjPiy28JV2-bFS-tKOHHf4uFuh93J-UZqs/s1600/IMG_0461.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkd002rJy1Tt-L_tCoHa_DXZmpJLPgJxJ_PGMHwPVbGjUy6nh42Ri8INs8uSXEmehYnzyneb8cJy4988sWp0r_w2vIlrOPUksHSfuk0BR8VWjPiy28JV2-bFS-tKOHHf4uFuh93J-UZqs/s1600/IMG_0461.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">2 Months</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNimLXFvJKyRRkZhsSH_HujtGKlctfsjTSgInzoKOtxpXJl1vL29nMPuSwn1Oqcelfes6XMyyiNWbw43-Z_Lqey2zsMMkjWtTWjIX3E7gLPN1bMsfCrZdkZTe6vzGf9XzYRdma52jFxRU/s1600/IMG_0496.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNimLXFvJKyRRkZhsSH_HujtGKlctfsjTSgInzoKOtxpXJl1vL29nMPuSwn1Oqcelfes6XMyyiNWbw43-Z_Lqey2zsMMkjWtTWjIX3E7gLPN1bMsfCrZdkZTe6vzGf9XzYRdma52jFxRU/s1600/IMG_0496.JPG" height="480" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family of Five - first family block party - life does not get anybetter</td></tr>
</tbody></table>
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Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com3tag:blogger.com,1999:blog-1180946282070400491.post-69138642783110881252014-02-17T20:15:00.001-08:002014-02-17T20:23:40.630-08:00Adding the ‘L’ in Gawel <style>
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Surprise <i style="mso-bidi-font-style: normal;">(not really)</i>
the Gawels are expecting Baby #3, aka 3G, in June. Most girls, like myself, can
sense when there is a newly pregnant friend in the universe and had already
picked up on the growing belly in a few Facebook pictures. Makes sense given I
was showing at 9 weeks. Fun fact: my mom noticed my belly getting bigger before
we announced I was pregnant – yep 3G was not waiting make his/herself known. </div>
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Of course having a third child brings out questions people
want to ask you but never actually do. They probably talk about it with others
but not directly to you <span style="font-family: Wingdings; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Cambria; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span>
I figured I would answer some of those questions to help facilitate the
conversation. Plus, let’s me honest . . . after JD there are usually a few
additional questions. </div>
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<b style="mso-bidi-font-weight: normal;">Planned or surprise?</b></div>
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Interesting question. Nate and I had decided on having a
third child . . .however, 3G decided (s)he wanted to join the family a bit
earlier than we planned. It seems as though my children do not follow my very
scheduled and organized life. Connor was two weeks late, JD was 4.5 weeks
early, and now 3G will arrive in the spring versus later in the year per our
plans. Guess we know who will run the show come June.</div>
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<b style="mso-bidi-font-weight: normal;">Will we find out the
gender?</b></div>
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This causes some controversy amongst our besties. No, we
will not find out the gender, we will be surprised in the delivery room like we
were with Connor and we would have been with JD had we not learned about his
entire genetic make-up. <span style="mso-spacerun: yes;"> </span>I love
hearing what others are having before the babies are born but for me I love a
good surprise. And we will not share names either . . . although the Olympics
sure do give us some more options to think about.<span style="mso-spacerun: yes;"> </span></div>
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<b style="mso-bidi-font-weight: normal;">What are we hoping
for? Boy or Girl?</b></div>
<div class="MsoNormal">
It would be nice to add a princess to the family. Nate,
Connor, and I all think it is a girl. When we asked Connor if he wanted a baby
brother or a baby sister he said with a shrug of his shoulders “I already have
a brother so now I need a sister.” He calls her Pinkberry and has already
picked out paint colors for her room and bathroom. Hope he realizes he will
have the pleasure of sharing that bathroom with her and JD for many, many, many
years to come. I am sure there will never be fights over time spent in the
bathroom. </div>
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All that said, we would also be happy with a new little
prince. Remaining the only princess in the family has its perks for me. </div>
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At this point, we <i style="mso-bidi-font-style: normal;">feel
</i>it is a girl and she will be a pistol. This pregnancy has given me the
gifts of nausea for 18+ weeks, high school boy worthy acne, and more colds and
headaches than the first 30-some-odd years of my life. The wonderful glow I
once had as a first time pregnant mommy has not been seen in years. Wah wah </div>
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Don’t get me wrong; I am one of those chicks that loves
being pregnant. I love the first signs of the belly even though I just look
fat. I love the first movements knowing there is a little person dancing
around. And I LOVE hearing the heartbeat at each of our doctor’s visits. Yet .
. . I am not quite as bouncy this time around. Am I old or is it just what
happens when you are on kid number 3?!?!</div>
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<b style="mso-bidi-font-weight: normal;">Will you be getting a
Mini-van?</b></div>
<div class="MsoNormal">
No! Next question please.</div>
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Now, for the big question that some people ask directly but
most ask me with their eyes . . .</div>
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<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Are you nervous about
having a “healthy” baby after .<span style="mso-spacerun: yes;"> </span>.
. you know, JD?</b></div>
<div class="MsoNormal">
Very easy . . . NO! No we are not nervous. No we are not
concerned about having a “healthy” baby. </div>
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<br /></div>
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Within the special needs community there are many different
takes on the “as long as the baby is healthy” saying. Some families find it
offensive. They hear “as long as my baby is not like yours.” My heart tells me
people are not trying to be cruel <span style="mso-spacerun: yes;"> </span>. . . but in reality most people do not wish for a child with
special needs. <span style="mso-spacerun: yes;"> </span>A year before we
received JD’s diagnosis a group of friends sat around having lunch discussing
life. During this discussion it became clear that half the group would do
anything NOT to have a child with special needs. I did not agree with this
mindset but I also was not raising my hand to volunteer. That conversation
stuck with me as I hit send on JD’s introduction email in January 2012. But two
year later we feel<span style="mso-spacerun: yes;"> </span>blessed to have
such a sweet, playful boy as a part of our family.</div>
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Once you have a child with special needs it seems people
think you are kinda broken even though JD was a de novo (spontaneous) deletion.
It could happen to anyone. Fun fact: identical twins are also a spontaneous
event with just a different outcome. Reproduction is very unpredictable for
everyone. A lot of things have to go right to have a “healthy” baby. So when
people ask us about a “healthy” baby I know what they are really asking. </div>
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Yet for us “as long as the baby is healthy” has nothing to
do with special needs. For us our goal is to have a child that does not end up
in the NICU. Connor was escorted to the NICU for 48 hours of observation due to
a fever I spiked during labor (a hospital policy which changed shortly after
his birth). I was wheeled down to the NICU every 3 hours to feed Connor. It was
brutal. And we know about JD’s extended stay at Children’s/Lurie’s. To us, the
saying “as long as the baby is healthy” means “as long as we don’t have to
visit the NICU.” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
From the beginning of my pregnancy with JD I sensed
something was different. From the beginning of this pregnancy I have sensed a “healthy”
baby that will…um let’s say be strong willed. No matter what we are excited to
expand the Gawel family. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Are you considered a high-risk
pregnancy?</b></div>
<div class="MsoNormal">
No. Once again, JD was a spontaneous deletion. Both Nate and
I were genetically tested when I was still pregnant with JD. The results showed
no abnormalities or balanced translocations. That being said, all future pregnancies
post JD will be considered on track until proven otherwise. <span style="mso-spacerun: yes;"> </span>And by all future pregnancies I mean
this one because 3 kiddos is our limit.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">How was the 20-week
ultrasound?</b></div>
<div class="MsoNormal">
Uneventful . . . which is what you want when you have had a
previous eventful 20-week ultrasound. 3G is measuring exactly to the day with
all other measurements looking wonderful. As the ultrasound tech measured each
checkpoint she would say “looks good” or “measuring normal” but when she got to
the femur she said “looks good . . . oh the femur is long the baby will be
tall.” Welcome to having a Gawel baby. Connor (3 years old) is taller than many
4 –year-olds, JD is longer than most of his peer group and our 16-year-old
nephew is 6’6” . . . and still growing. Olympic volleyball player maybe?
Already working on my pushy mom skills.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Just to make sure the baby stays in control (s)he showed us
his/her stubborn side. When trying to get pictures of the heart and profile
(s)he would not show the goods. The heart scan is a very important part of the
20-week for all babies but with our history they wanted to be extra careful.
Due to this snag we had the pleasure of returning two days later for a Level II
ultrasound of the heart. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If you remember the Level II ultrasound is not performed at
our doctor’s office but at offsite location with a “specialized” doctor reading
the tech’s report. This “specialized” doctor is the same person who walked into
the room after JD’s Level II ultrasound and said, “I guess I am the barer of
bad news.” And continued to shrug his shoulders when I asked questions (check
out the amazingly heartless conversation here). Needless to say Nate and I were
pumped to meet up with this man again.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Long story short .<span style="mso-spacerun: yes;">
</span>. .<span style="mso-spacerun: yes;"> </span>everything looks great.
Heart is pumping strong with a high heart rate in the 160s with a cute little
nose in the profile pictures. </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGNoM6X0iNuMLORAzycA4ZqdmIpAKAWriz2hzjwriSLNlU-T6xhLgP3gdZZryxamwY-kdh-m64y7DTIbnVRF9AarAg2c0h2TeQ4moY5wFaVqxcGdGYbHipjXVWo5oIlfQ1kK7LSTc1SMs/s1600/Picture+11.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGNoM6X0iNuMLORAzycA4ZqdmIpAKAWriz2hzjwriSLNlU-T6xhLgP3gdZZryxamwY-kdh-m64y7DTIbnVRF9AarAg2c0h2TeQ4moY5wFaVqxcGdGYbHipjXVWo5oIlfQ1kK7LSTc1SMs/s1600/Picture+11.png" height="275" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cute button nose</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
However, the excitement continued when Dr. Great Bedside
Manner came in to talk to us. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Doctor <i style="mso-bidi-font-style: normal;">(as soon as he walks into the room)</i>:</b>
“Last time baby had problems, this time baby has no problems.”</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">Nate and I look at each other and smile</i></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Doctor:</b> “How old
is the baby now? How is the baby doing . . . you know (<i style="mso-bidi-font-style: normal;">then he waves his hand over his head</i>) mentally.”</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Me:</b> “Ummm, he 22-months
and he is doing really well and growing stronger everyday and continuing to
develop.</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Doctor:</b> -------<i style="mso-bidi-font-style: normal;">Crickets</i></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Me</b>: Okay, thanks.
All is good.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As soon as the doctor left Nate and I burst into laughter.
Who asks a question like that? Not “how is he developing cognitively or socially”
nope he waves his hand over his head and asks how he is doing “mentally”?!?!?
Nate and I are pretty laid back people and do not offend easily which is why we
could not control our laughter . . . however, most other people would have been
very upset with this conversation and rightly so. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Whatever. Nate and I are very pleased with JD’s new
milestones and his development so silly questions from rude people don’t bother
us. It just adds a new joke to our super hilarious conversations.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Growing up as an only child I have always wanted a large
family. While having 3 kids under the age of 4-years-old sounds insane (and
probably is insane) all I can see is the future. Big events with tables that
barely fit our family, a fireplace filled with Christmas stockings, vacations
with pictures full of smiles, family sporting events with the largest cheering
section coming from the Gawels, and three siblings who work together, play
together, and support each other throughout all of life’s adventures.<span style="mso-spacerun: yes;"> </span>The Gawel Adventure List continues to
grow with exciting and new quests in our future.</div>
<div class="MsoNormal">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggy9PvcNfMaiILBuoRkMwHGsgPXBjmJGXoHeK0Q3o-rz9xMAZdoystFeJu9ecMcu3Fak5txQgBZ8DsFdS6v7Ay18S5caWZEOAQVB0xge39Zr8P6Q0xC3mLYKXp-G-h7II57E_tFrRbwww/s1600/Picture+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggy9PvcNfMaiILBuoRkMwHGsgPXBjmJGXoHeK0Q3o-rz9xMAZdoystFeJu9ecMcu3Fak5txQgBZ8DsFdS6v7Ay18S5caWZEOAQVB0xge39Zr8P6Q0xC3mLYKXp-G-h7II57E_tFrRbwww/s1600/Picture+2.jpg" height="156" width="640" /></a></div>
<br />Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com5tag:blogger.com,1999:blog-1180946282070400491.post-37830847839409430562014-01-03T16:07:00.002-08:002014-01-03T20:29:43.735-08:00Wolf Hirschhorn Syndrome: Two Years Later<style>
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<br />
<div class="MsoNormal">
Late in the summer of 2008 I was enjoying life as a newlywed
with very little responsibility. Funny how the months following your wedding
are similar to the months following graduation from college -- pressure of
planning has been lifted, cocktailing often, and no immediate expectations from
anyone. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
During that time I had the pleasure of attending my
company’s management off-site (<i style="mso-bidi-font-style: normal;">super fun</i>)
which included team-building, lots of sharing, and an “expert” motivational
speaker telling us we should “<i style="mso-bidi-font-style: normal;">strive to
do what we truly want to do in life.</i>” Let me tell ya, in a dark ballroom in
the basement of The American Club in Kohler, WI no one was doing what he or she
truly wanted to do in life. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
However, we all played along and participated in the
activity Mr. Expert explained would <i style="mso-bidi-font-style: normal;">“help
us become better managers and media experts and humans</i>”<span style="mso-spacerun: yes;"> </span>. . . or something like that. While I
mock, I can still clearly remember one super lame activity five years later. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Mr. Expert had everyone write his or her life story in 7
words. “<i style="mso-bidi-font-style: normal;">Where do you want to go? What do
you want to be? What do you expect of your future?”</i> Yep, everyone groaned
and whined about how that was impossible and silly and what does this have to
do with media? But we took a few minutes and came up with our seven-word life
story. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Next, Mr. Expert asked a few of us to share with the group.
Here are a few:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“I should have been a writer instead”</div>
<div class="MsoNormal">
“This job needs to pay more money”</div>
<div class="MsoNormal">
“Three years I won’t be in media”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Sensing a theme here? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Finally, my former manager and friend, Rebecca, who was
sitting across the room, raised her hand to offer her seven-word life story:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“Exactly where I thought I would be”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“What?!?!” I shouted. “No way, those are my exact words as
well.” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Mr. Expert glared at me and said, “Let me see your paper. Never
in all my years have I ever seen two exact same seven-word life story.” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He was actually mad but we thought it was perfect. Rebecca
and I are . . let’s just say very detail-orientated (I am sure some of the team
that worked for us might have some other words). We worked well together, had
the same work ethic, and both LOVED the movie <i style="mso-bidi-font-style: normal;">Girls Just Want to Have Fun</i>. <span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Post off-site, Rebecca and I joked about our seven-word life
story often. I came back to those words frequently (<i style="mso-bidi-font-style: normal;">maybe off-site, team building exercises are not totally worthless</i>).
I truly was exactly where I thought I would be -- happily married to my best
friend, taking advantage of the fabulous city, working at my dream company from
college, and enjoying life. Don’t get me wrong everyday was not roses, but for
the most part life made me smile.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Fast-forward to December 20, 2011 . . . my 32<sup>nd</sup>
birthday and the night before our amniocentesis. Facebook overflowed with
birthday wishes from friendly faces who had no idea we were not smiling. Each
one was sweet and heartfelt but it was Rebecca’s that stuck “Happy Bday Jen! I hope
you still feel your 7 words are true.” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I cried as I read the line over and over and over. I so
badly wanted to say “No, I’m lost. I never thought I’d be here anticipating an
amnio during my birthday dinner. This is not where I wanted to be. This was not
my vision from the summer of 2008.” I spent much of the holidays crying wondering
if I would ever find my way back. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
By January 3, 2012, after hanging up the phone with the
geneticist, I no longer had words for my seven-word life story. Nothing. It was
blank. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I never imagined I would spend 5 hours a week watching therapists
teach my son to sit, to hold his head up, and to play with toys. I never
imagined I would spend 3 hours a week shopping for, making, and cleaning up
blenderized food to feed through a tube that goes into my son’s stomach. I
never imagined I would know the words Wolf or Hirschhorn. I never imagined I
would spend close to 200 days (if you add up all the hours with over-night
stays and doctor’s visits) in a children’s hospital in the first two years of
my son’s life. I never imagined shooting up in the middle of the night hoping and
praying my son would take a breath after a rough coughing fit. I never imagined
wondering if my son will ever see 2 . . .5 . . . 10 birthday candles on a cake.
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And yet . . .</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I never imagined the joy of watching
our 21-month old son roll over after 5 minutes of trying very hard. I never
imagined I would tear up as my 3-year old holds his brother’s hand teaching him
how to push his favorite John Deere tracker. I never imagined friends from long
ago reaching out to learn more about our son. I never imagined getting long,
strong hugs from close friends and strangers after meeting my son. I never
imagined having a whole new group of friends who have little buddies similar to
our son. I never imagined how much love and strength a chromosome deletion
could bring to a marriage and family. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today, on January 3, 2014, two years after hearing “We got
your results back and we found a chromosome abnormality. There is a small deletion
on the short arm of chromosome 4. This has been classified as a very, very rare
syndrome known as Wolf-Hirschhorn Syndrome” I have my words back. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“Kinda where I thought I would be”</div>
<div class="MsoNormal">
or</div>
<div class="MsoNormal">
“Exactly where I should be right now”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My seven-word life story has slightly shifted but I’m still
the happy newlywed from 5½ years ago and I sure have far more love and smiles
in my life than I ever imagined.</div>
<div class="MsoNormal">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUZwP9tD0EbLooETe3-vs0kspsKMzsS8S0FnLg-1r7x7Vul1dsGZo90-5wnX6aKkgrxVCTcJRtCSDUELK5eUYiq9Wg6iKmEnzvxfAISHo6th6OQ3cFHzBiaF93MgEDY5WqdCXleGkO9HU/s1600/IMG_3354.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUZwP9tD0EbLooETe3-vs0kspsKMzsS8S0FnLg-1r7x7Vul1dsGZo90-5wnX6aKkgrxVCTcJRtCSDUELK5eUYiq9Wg6iKmEnzvxfAISHo6th6OQ3cFHzBiaF93MgEDY5WqdCXleGkO9HU/s400/IMG_3354.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cookie decorating Day</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq70-mGW-TFS8ElzaY7bldXE_N3r3_wgPmqwr43jhS2a3OboZBIoZpE58c8nlrmsNaz2CAuY9XFkqsXc0h2X53Sfc4-5AHryNUBDN2wG8wtTkf8NXc45OVL8-NUKDqb34iBbNmmpsoRQM/s1600/IMG_3360.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq70-mGW-TFS8ElzaY7bldXE_N3r3_wgPmqwr43jhS2a3OboZBIoZpE58c8nlrmsNaz2CAuY9XFkqsXc0h2X53Sfc4-5AHryNUBDN2wG8wtTkf8NXc45OVL8-NUKDqb34iBbNmmpsoRQM/s400/IMG_3360.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cookie Decorating Day</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
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<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCpbJfOHo1VYGDN1UU7XDfL8ch6T5ni67fh1jGVYjr8473ZIYbdk8TfSB4NDi14lqPQnt5H2D6m-WN5GtiVZVJ6riX9Hb-TkIb_WeG_CJyEDBgum0VVQl0xKVOueHR8r9G-JeaM0vubm0/s1600/IMG_3396.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCpbJfOHo1VYGDN1UU7XDfL8ch6T5ni67fh1jGVYjr8473ZIYbdk8TfSB4NDi14lqPQnt5H2D6m-WN5GtiVZVJ6riX9Hb-TkIb_WeG_CJyEDBgum0VVQl0xKVOueHR8r9G-JeaM0vubm0/s400/IMG_3396.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting for Santa</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwoRlKEJuly5icAAqlVlJqUO2iFzHlP0lc8dv5A7tbFHY3KoskGs9s6xKFexU2DQBiquL5xVgajMwZ5KXYYLta_IKC_d_o0TTT0rlcAJW6_lFuqCg6aD8slkMonMrAisskAuBr_cK3eLY/s1600/IMG_3418.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwoRlKEJuly5icAAqlVlJqUO2iFzHlP0lc8dv5A7tbFHY3KoskGs9s6xKFexU2DQBiquL5xVgajMwZ5KXYYLta_IKC_d_o0TTT0rlcAJW6_lFuqCg6aD8slkMonMrAisskAuBr_cK3eLY/s400/IMG_3418.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Holiday Sing-a-Long at School</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXR9VqWzbPVZphbjAA2cW2RMwAtkwQ4p0STLwgawGDewzWQzYFSsiXVwlaR0NGpy8p5UXgoyMQloa_jGPZHhHeNiI0KUiEd7j7yu2pDBpVnpe5A2XMQas702fo763QK0NihXHSpmfAshg/s1600/IMG_3431.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXR9VqWzbPVZphbjAA2cW2RMwAtkwQ4p0STLwgawGDewzWQzYFSsiXVwlaR0NGpy8p5UXgoyMQloa_jGPZHhHeNiI0KUiEd7j7yu2pDBpVnpe5A2XMQas702fo763QK0NihXHSpmfAshg/s640/IMG_3431.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matching PJs are the best</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimiocVo8zN4EqgtTPOdZfSxOXKB5DnYsw7XDuzKIBXKTT6eA8TtbNI0MR_Jg3GjDQjt2CENaA7KAqVjiohukptb1haZ0YNAHFmkT5JbRDCLcXKlkH8U1bPQRbk5Hubo_GdQm9-SSDNuMA/s1600/IMG_3439.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimiocVo8zN4EqgtTPOdZfSxOXKB5DnYsw7XDuzKIBXKTT6eA8TtbNI0MR_Jg3GjDQjt2CENaA7KAqVjiohukptb1haZ0YNAHFmkT5JbRDCLcXKlkH8U1bPQRbk5Hubo_GdQm9-SSDNuMA/s640/IMG_3439.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brothers in bowties on Christmas Eve</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPJd_mPsWmq-O6YpBoClTAGOxPcACek_wiyb6w133HOUCy_nQcTjq1Ebv1cEnuoqXmtcCR7isOh4UUw1fgSwJyTkAdKO5v55i5RXpzeamPvh7AoPp51nfxBnqskG8bwwdD5Ysy0vd_XZ0/s1600/IMG_6459.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPJd_mPsWmq-O6YpBoClTAGOxPcACek_wiyb6w133HOUCy_nQcTjq1Ebv1cEnuoqXmtcCR7isOh4UUw1fgSwJyTkAdKO5v55i5RXpzeamPvh7AoPp51nfxBnqskG8bwwdD5Ysy0vd_XZ0/s640/IMG_6459.jpg" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Connor asked for a harmonica and bongos - JD asked for a rocking horse . . . Santa delivered</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMP0Aqpez7nnZ7Z_bT8pXPJ2tvBkFYp7e3bekthUGHhhuOvL3gqTPqxvFP0brhzBW3QPlXPBl6TEfQLHxpBwqh2dQThsasFpxq5y-J2wE7eDZrFDAt7dv_gwM8S0YToZIwWAityJr10Ik/s1600/IMG_6612.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMP0Aqpez7nnZ7Z_bT8pXPJ2tvBkFYp7e3bekthUGHhhuOvL3gqTPqxvFP0brhzBW3QPlXPBl6TEfQLHxpBwqh2dQThsasFpxq5y-J2wE7eDZrFDAt7dv_gwM8S0YToZIwWAityJr10Ik/s640/IMG_6612.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Christmas Morning besties</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNhT35zrlhjqnDwGcCOpHHeP1IMaU9hSeua8qCk36ND6z3OWzA5Ea3M_nTo6-eEEKB_dF_yNOOzzicqY-6iFrzKu-LqSb-0QcPlUNalo0fxZzIWI5KbFPpMVSXsn4uhUfT70BC7pcAh1o/s1600/IMG_6680.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNhT35zrlhjqnDwGcCOpHHeP1IMaU9hSeua8qCk36ND6z3OWzA5Ea3M_nTo6-eEEKB_dF_yNOOzzicqY-6iFrzKu-LqSb-0QcPlUNalo0fxZzIWI5KbFPpMVSXsn4uhUfT70BC7pcAh1o/s640/IMG_6680.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our gift!</td></tr>
</tbody></table>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com3tag:blogger.com,1999:blog-1180946282070400491.post-90984191034563192582013-12-15T15:12:00.000-08:002013-12-15T15:12:00.258-08:00December 15: Two Years Later
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<br />
<div class="MsoNormal">
Puffy red eyes, pit in stomach, broken spirit, and bad hair.
This is how I walked into Nate’s Holiday Party on December 15, 2011. Halfway
through my second pregnancy, 20-weeks and it all changed. <span style="mso-spacerun: yes;"> </span>This year I walked in with a big smile,
fancy dress, and great hair (in my opinion). Two years later I would never have
imagined this is where we <i style="mso-bidi-font-style: normal;">could</i> and <i style="mso-bidi-font-style: normal;">would</i> be. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The story has been told many times (check it out <a href="http://www.growingupgawel.blogspot.com/p/from-beginning.html" target="_blank">here</a> is you wish), each time with more joy
and happiness. On December 15, 2011 I never believed I could talk
about our 20-week appointment without nonstop tears . . . and yet, it’s where I
begin every story. Every moment, every tear, every smile, every adventure of
our family of four started on that day. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It would still be 3 weeks before we would hear the words
Wolf-Hirschhorn Syndrome but December 15<sup>th</sup> was the day the Gawel
path changed course. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We never felt sorry for ourselves. We never asked “why us, why
not them.” On the other hand, we wondered why we were sent on this path. Not in
a cynical and sad way but in a way that helps answer questions and process
grief. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Most of my tears were alone when Connor was sleeping and
Nate was at work. It was during that time when I tried to make sense of this
new path. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“What does this mean for <i style="mso-bidi-font-style: normal;">my</i>
future?” </div>
<div class="MsoNormal">
“How will this affect <i style="mso-bidi-font-style: normal;">my</i>
family?”</div>
<div class="MsoNormal">
“Will I ever understand why <i style="mso-bidi-font-style: normal;">Nate and I</i> were sent on this new path?”</div>
<div class="MsoNormal">
“Are <i style="mso-bidi-font-style: normal;">we</i> supposed
to help others?”</div>
<div class="MsoNormal">
“Do <i style="mso-bidi-font-style: normal;">we</i> need more
love in our hearts and lives?”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Endless questions surrounding Nate and me. How selfish!
Never once did I look at it from a different perspective. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then one tiny moment changed my view. One snap of a photo
helped me to see our story from a different view.</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNH0kuxctWKd4NHalN4uc7PTnNQd5X7UFXOx4G01iQEdio0DgqFeEOgN2e3EwfIljS9QBdmIY5kJCznsQnBTK9J24adlD1eQOlJVUpMfSvJIKW8bmm0jT5lFf4wnXHN5WLmrcp13UnEaQ/s1600/IMG_6424_2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNH0kuxctWKd4NHalN4uc7PTnNQd5X7UFXOx4G01iQEdio0DgqFeEOgN2e3EwfIljS9QBdmIY5kJCznsQnBTK9J24adlD1eQOlJVUpMfSvJIKW8bmm0jT5lFf4wnXHN5WLmrcp13UnEaQ/s640/IMG_6424_2.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brothers playing</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Maybe this path has nothing to do with Nate. Maybe this path
has nothing to do with me. But rather the Gawels were given this path for
Connor. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After watching Connor play with JD while in his stander it helped me realize this journey we were sent on could be for Connor. Why does it
have to be about JD’s parents? The reason for our path of a rare diagnosis
could be for JD’s brother. Having JD as his brother will help shape Connor’s
future forever. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Maybe Connor will become a therapist as he enjoys watching
and assisting during JD’s sessions. Or maybe Connor will invent a lightweight
wheelchair that can convert to a running chair for active families. Or maybe he
can start an organization to aid families that cannot afford proper medical
equipment. Or maybe it’s subtle. Maybe Connor will be the kid in school that is
nice to the one student that is always alone or stops other peers from teasing
the quiet classmate. Maybe it will help him have a kinder heart. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It probably seems I am always thinking deep thoughts but
when your life changes drastically you tend to reflect . . . A LOT! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Who knows where this path will take any of us. But I have
stopped wondering why. Mostly likely I will never get a final answer but I sure
hope we are living up to our end of the deal. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Many more December 15ths will come and go but with each one
we will smile a little bigger and hug a little tighter.</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfOav32Xkd9gcX5SU9vg5uh7LTocapZK0gVnW41hNxaRixt2RRDvturYYwMlqCg5bWIXc64c7Gf3TMHTkkqpQkto6P-hP0aOd6Vi2mMsWbpHkPAISpjsCmJEEi2xzl57Ja0jpp7c7pBMk/s1600/IMG_6422.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfOav32Xkd9gcX5SU9vg5uh7LTocapZK0gVnW41hNxaRixt2RRDvturYYwMlqCg5bWIXc64c7Gf3TMHTkkqpQkto6P-hP0aOd6Vi2mMsWbpHkPAISpjsCmJEEi2xzl57Ja0jpp7c7pBMk/s640/IMG_6422.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">JD had a hard time taking his eyes off the lights of the tree</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihkzttGYFPRzH0g2gZyQYI6jo8JWWPMSqQbhyphenhyphenIG8JgKOF47syvzQh6H-8af9D00cGHHXSFb05l4S3geeB9IsCbEeEsPZFkL59TDFi5-cGolz9u7NurAJDiANYr6xkRYuTzF5N6W7IZLoU/s1600/IMG_6423.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihkzttGYFPRzH0g2gZyQYI6jo8JWWPMSqQbhyphenhyphenIG8JgKOF47syvzQh6H-8af9D00cGHHXSFb05l4S3geeB9IsCbEeEsPZFkL59TDFi5-cGolz9u7NurAJDiANYr6xkRYuTzF5N6W7IZLoU/s640/IMG_6423.jpg" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It's a little blurry but this is JD in his stander</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikhTzOKPHdoyRkXYvxD-qgUEhO42ecFK0yG6Ji7rXaHXEROW9RxbizAZzDBnCbavIPzGdzwuesBNH6INIQb4cmiOpJeMTXM59HbULEF2gpdhclo5t17UWVvG8p0p8VBvhMeFeRcqNMrWI/s1600/IMG_6427.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikhTzOKPHdoyRkXYvxD-qgUEhO42ecFK0yG6Ji7rXaHXEROW9RxbizAZzDBnCbavIPzGdzwuesBNH6INIQb4cmiOpJeMTXM59HbULEF2gpdhclo5t17UWVvG8p0p8VBvhMeFeRcqNMrWI/s640/IMG_6427.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">JD wants to know why Connor get the fluffy hat and he gets the scratchy one</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgddCU0-m7vXMiwPEVfVOJbXx-eK3G5mRFmH1AoRuW-RX9zzS_Ja9A1Zm8vLDtI1Log99vBvtaKDpiziGOEp7pJ2lVFQxwM_sL5rMOW2Jqym9p2GLpmHh5KV80Qi1JNUK1SChuQqXjiWVA/s1600/IMG_6395.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgddCU0-m7vXMiwPEVfVOJbXx-eK3G5mRFmH1AoRuW-RX9zzS_Ja9A1Zm8vLDtI1Log99vBvtaKDpiziGOEp7pJ2lVFQxwM_sL5rMOW2Jqym9p2GLpmHh5KV80Qi1JNUK1SChuQqXjiWVA/s640/IMG_6395.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Look at the concentration while cookie decorating</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_T-BAQKNY9XKbNJGsY-xtacHaXXMxtU9XXDnr-YC3YWKSHjmMtYgIqgPnCjy1sET0o6IFsEp0Dx7_k21fYRPzU_b_4a2Ph0ESh6jCVIgLHgGQrZED1xMXWGMY2lA1AW8URN5MGCaFjSg/s1600/IMG_6404.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_T-BAQKNY9XKbNJGsY-xtacHaXXMxtU9XXDnr-YC3YWKSHjmMtYgIqgPnCjy1sET0o6IFsEp0Dx7_k21fYRPzU_b_4a2Ph0ESh6jCVIgLHgGQrZED1xMXWGMY2lA1AW8URN5MGCaFjSg/s640/IMG_6404.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">JD is not impressed by decorating but he did enjoy a taste of the frosting </td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com2tag:blogger.com,1999:blog-1180946282070400491.post-87675922461566220022013-10-31T19:58:00.000-07:002013-10-31T19:58:38.653-07:00A Superhero Flies High
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<br />
<div class="MsoNormal">
I consider Sommer a dear friend . . . and yet I have never
met Sommer in person. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have never spoken to her on the phone. </div>
<div class="MsoNormal">
I do not know what her voice sounds like. </div>
<div class="MsoNormal">
High & soft or low & gruff (I am leaning more
towards high and soft). </div>
<div class="MsoNormal">
If Sommer walked by me on the street I might easily pass her
by without noticing. <span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
I do not know her style or her true hair color or if she is obsessed
with Royal Family (a very important fact). </div>
<div class="MsoNormal">
I do know she loves the Patriots and the Boston Red Sox
(congrats). </div>
<div class="MsoNormal">
There is a chance she actually keeps up with that all K
family (I really hope not) and she might not consider <i style="mso-bidi-font-style: normal;">Back to the Future</i> one of the greats (again, that would be sad). </div>
<div class="MsoNormal">
And still . . .with all these unknowns I consider Sommer a
friend. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
How do you befriend a person you have never spoken to? Easy,
the internet. Sounds pretty creepy but trust me Sommer is a friend!<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Shortly after we received JD’s diagnosis I became mildly (<i style="mso-bidi-font-style: normal;">extremely</i>) obsessed with learning about
other families who were living with a rare diagnosis. Comforting is a strange
word to use as we navigated our own rare syndrome. Nevertheless, we found
comfort in strangers as they shared their lives living with unpronounceable
words attached to their children’s medical history.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Through my brave cousin, who openly shared the story of
losing her <a href="http://tinysparrowfoundation.org/?p=1574" target="_blank">5-month old son</a> with a unique organization <a href="http://tinysparrowfoundation.org/" target="_blank">Tiny Sparrow Foundation</a>,
I started to get the full picture of these courageous families.<span style="mso-spacerun: yes;"> </span>Tiny Sparrow is a non-profit founded to
provide lasting memories through photography for families with children facing life-threatening
illnesses. Daily, I would look for updates and new stories of inspiring
families. Some stories were met with smiles, some with tears but most of all
they were met with hope. The hope that once JD was born we too would be smiling
in front of the camera. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One day in June 2012 while rocking JD in the NICU, I came across
<a href="http://tinysparrowfoundation.org/?p=1904#" target="_blank">Owen’s story</a>. To say Owen’s eyes were the first things I noticed is an
understatement.<span style="mso-spacerun: yes;"> </span>The soul and life
expressed in his baby blues had me coming back to the story throughout the day.
Within the Tiny Sparrow story, Owen’s mom shared a link to her blog. Clicking
on the link I planned to spend a few minutes skimming Owen’s story. Two hours
later I had soaked up every word ever written about Owen . . . more than once.
I became attached to this little boy and his loving family. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At two months of age, Owen parents, Sommer & Pete, were
given the news Owen had Leukodystrophy, a very large word for abnormalities of
the white matter of his brain. Thinking you are in the home stretch of the
newborn phase to finding out life altering information is impossible to
describe.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Immediately, I connected with Sommer as I read her raw
emotion. “In one swift moment we went from thinking our child had three benign
(colic, reflux, and dairy intolerance) problems, ones he would likely outgrow
by three months, to realizing that our son is not going to live.” I know those
words by heart. I reread those words more times than I will admit. At the time
I was living those words. Our baby went from having a few anomalies on an
ultrasound screen to being diagnosed with a syndrome that may take him from us
too early. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At that moment without Sommer even knowing my name we became
friends. After a few days, I continued to go back to Sommer’s <a href="http://lovingowen.blogspot.com/" target="_blank"><i style="mso-bidi-font-style: normal;">Loving Owen</i></a> blog. I finally decided to
write a comment including a link to our family blog. There was something about
Owen and Sommer and their family that made me want to send a hug and an “I get
it.” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A month later Sommer commented on one of my posts. You would
have thought Duchess Catherine herself commented with how excited I was to hear
from Sommer. Hence, we began the mom version of a Bromance (maybe a
Momance???). Over time we made it Facebook official and became friends making
it easier to follow each other’s families. In June 2013, we nominated Owen to
receive a Tiny Superhero cape as he embarked on his journey with GTube surgery.
He wore it proudly on the back of his wheelchair everyday. </div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqNb2xlTsITestyfBn5oQne3hSoD1fcAEY4hXeDr0ERbDxq5f4ApK9lEHcAezuz0PmUROW3xl54NVa20c5jbNRH9g3q5ib0Fe_F5h5F3pAQeBzYjVhKqubv40Xju3TcWVII2FiTxZSwaQ/s1600/Picture+1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqNb2xlTsITestyfBn5oQne3hSoD1fcAEY4hXeDr0ERbDxq5f4ApK9lEHcAezuz0PmUROW3xl54NVa20c5jbNRH9g3q5ib0Fe_F5h5F3pAQeBzYjVhKqubv40Xju3TcWVII2FiTxZSwaQ/s320/Picture+1.png" width="237" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
From the beginning, Owen’s life had a time limit according
to the world of Leukodystrophy . . . and yet, through some very rough times and
illnesses Owen pulled through. Owen and his family were able to celebrate
numerous holidays, family celebrations, sporting events, and most importantly
birthdays. In August, Owen celebrated his 2<sup>nd</sup> birthday! In the
Wolf-Hirschhorn world the 2<sup>nd</sup> birthday is a BIG one. Things change
after the 2<sup>nd</sup> birthday. Statistics change. While Owen does not have
WHS when I read he celebrated his 2<sup>nd</sup> birthday I celebrated for
Sommer.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The past few months have been crazy busy for the Gawels and
I have been a bad friend in not being able to read every post and update on the
day they are posted. It bums me out because I do so love hearing about Owen. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On October 16, as Gramps read to Connor and JD slept in my
arms I had a few minutes to read about my little buddy Owen. Sommer had posted
a brand new update that day. Prefect! What a great place to start then work my
way back over the few I had missed. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It is unexplainable why on that day I had a few moments to
spare. Why on that day did I choose to catch up with Owen? On that same day,
the one day in months I had a precious me time Sommer posted <a href="http://lovingowen.blogspot.com/2013/10/flying-high.html" target="_blank">these words</a>: “My
beautiful baby boy earned his angel wings this morning.” Oh how my heart hurt
for Sommer. I was stunned. How could I be so selfish and not have kept up with
the blog over the previous month? I quickly read over the recent posts looking
for clues of this outcome. I wish I could be there for my friend Sommer. I
debated about flying to the service of a little boy I had never met because
that is how close I felt to Owen and his family. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Explaining the connection is difficult. Any parent hurts
when they hear another parent has lost their young child because it is
something most can never imagine. However, when a parent has a medically
complex child hearing about the loss of another buddy is gut wrenching. Because
as that parent I <i style="mso-bidi-font-style: normal;">have</i> imagined what
it would be like to lose my child. I <i style="mso-bidi-font-style: normal;">have</i>
had the hard discussions with the experts and my husband. And I<i style="mso-bidi-font-style: normal;"> have</i> cried at the fear of the unknown. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Owen has been gone for two weeks and Sommer is still my
friend. She continues to follow JD and has sent loving prayers this week as he
tackles the paranormal flu. Right now all I can do is honor Owen the best I can
and send a virtual hug to Sommer. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As life’s unknowns continue to pop up all around us one
thing is for sure<span style="mso-spacerun: yes;"> </span>. . . the city
of Boston needs to throw a fist bump towards the clouds and thank their
strongest, littlest, red headed fan for a World Series win. Some may say the
beards won it for Boston but I say they had an extra angel in the outfield. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Keep flying high Super Owen!</div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com4tag:blogger.com,1999:blog-1180946282070400491.post-77046284756996217232013-07-31T20:01:00.003-07:002013-07-31T20:01:59.885-07:00Post-Op Day 5: Can I get some food please?
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<div class="MsoNormal">
Chest tube is out! YAY! Watching the NP take the tube out was
fascinating. Cut the stitch and pull. Very medical. We love no tube for two
reasons: 1) The drainage in his chest has stopped and 2) Only one more wire
(the central line) holding us back from snuggling. Actually, we can hold him
now if we want but there are just too many things we can pull out that make us
nervous. Until the central line comes out JD gets lots of head rubs, hand
holding, and parents with bad backs leaning over the crib.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Last night was a rough one for the little man (and Nate
given it was his night shift at the hospital). He is standing his ground hating
the formula. Gagging, coughing, and spikes in temp lead to taking a step back
and going back to IV fluids. Turns out he was dehydrated from lack of food and
fluids and the fever. Labs came back fine with no infection, x-ray showed his
lungs and insides look good, and Echo showed no fluid build up. All good
things. After talking to Dr. D and Dr. Cardiology we feel the spike in temp
could be very normal post op as he works on regulating his own body temp. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dr. D, Dr. Cardiology, Dr. Cardiac Surgeon, and the NP all
confessed they absolutely believed JD would still be vented (using a breathing
tube) at this point in his recovery. While this feeding dilemma is a set back
the doctors have not stopped grinning ear-to-ear with the great news of JD's
strong breathing. He spent most of the day with his saturation levels around 97
without oxygen. From a cardiac standpoint, from a respiratory standpoint, and
from an overall health standpoint JD is stellar and ready to head home.
However, we need to work this feeding piece. </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA26nPwfYgPxXvSrJz141_yC6Xvlje8GzQTJiEhh9yQv-ZXJbdysMw1av_la8FNdYfZdHIQrwXeOSFY5-vLHX51zyVeybzFhkK3pfN1wLayvkrH1eIOJ5_jf76p6q7fKv4qf-Zh7JO-Xo/s1600/IMG_2756.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA26nPwfYgPxXvSrJz141_yC6Xvlje8GzQTJiEhh9yQv-ZXJbdysMw1av_la8FNdYfZdHIQrwXeOSFY5-vLHX51zyVeybzFhkK3pfN1wLayvkrH1eIOJ5_jf76p6q7fKv4qf-Zh7JO-Xo/s640/IMG_2756.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">When we say his numbers look good this is what we are looking at: 98 = heart rate, 27 = rate of breathing, 100 = oxygen saturation level</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At this point we have backed all the way up and we are
starting over. Very slow continuous feeds with Pedialyte (yes I know Pedialyte
is just water with chemicals which I hate but this mixture is keeping JD
hydrated so we will take it). Then we move to half Pedialyte & half
formula, then full formula, then slowly move back to his final volumes. It will
take the next few days to ensure we can slowly ramp up but this is the best
process for him. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Honestly, I was a bit frustrated and disappointed this
morning at the set back but I realized this feeding issue is okay. Being on a
floor with cardiac babies is very humbling. Watching doctors run down the hall
as the “code” alarm is going off, walking past 5lb babies who just had open
heart surgery, and seeing parents quietly have conferences with the doctors
makes me realize we are so blessed with JD's "complication." When the
doctors round we are their last stop because JD is the least sick. This is a
good place to be. I keep telling myself everyday how wonderfully amazing JD is
doing and this feeding thing can be fixed. Everyone has a picky eater, right?</div>
<div class="MsoNormal">
<br /></div>
<div align="center" class="MsoNormal" style="text-align: center;">
*************</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Wanted to give a shout out to JD's big brother Connor who
has been handling mom and dad's absence like a champ. It might help that we took
him out yesterday for the biggest ice cream cone he has ever seen. He asks
about JD, he misses JD, and he wants to Facetime with JD every night. What a
great big bro! </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP0DI3wxQbBPvf_jypO7g2l4kXgtriFqpDD2dP1DB6LHGaftSxOyQrPiphA_JdjQgNf9w02qNhYYDMZHVg0EDmOBntmzjlLbsXGx0goJAirfLOjDVN2-c7MCEFA7tAOQCwihk_v1K-lSE/s1600/IMG_2740.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP0DI3wxQbBPvf_jypO7g2l4kXgtriFqpDD2dP1DB6LHGaftSxOyQrPiphA_JdjQgNf9w02qNhYYDMZHVg0EDmOBntmzjlLbsXGx0goJAirfLOjDVN2-c7MCEFA7tAOQCwihk_v1K-lSE/s640/IMG_2740.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ghirardelli Cookies & Cream</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Also, a HUGE shout out to the fantastic nurses who have been
crushing on JD. They have spent the last 5 days working <i style="mso-bidi-font-style: normal;">with</i> us to find the best balance for JD. If you have ever spent an
extended time in the hospital you can appreciate the importance of the nurses.
Not only are the nurses amazing on our floor but our very own Nurse Amy from
the NICU stopped by to give high fives and kisses to JD. </div>
<div class="MsoNormal">
<br /></div>
<div align="center" class="MsoNormal" style="text-align: center;">
*************</div>
<div align="center" class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal">
The plan for tonight is to keep JD comfy and let him sleep.
Continuous Pedialyte throughout the night then in the morning we will start
adding formula. Prayers for a smooth transition. Until tomorrow . . .</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwW1j6zBS-cCyGTIM72ZC50Fj_jbMchRNdUrPcKWw3eHF3KAY9toDuKnr5l3nxfCVbRxGOQ7zrhdP7fI7D7LDgzHntecTv7OAMmo7Sky44WsjS8Nnji7YE13xFxixm8VhKVSsUBRyNWv8/s1600/IMG_2747.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwW1j6zBS-cCyGTIM72ZC50Fj_jbMchRNdUrPcKWw3eHF3KAY9toDuKnr5l3nxfCVbRxGOQ7zrhdP7fI7D7LDgzHntecTv7OAMmo7Sky44WsjS8Nnji7YE13xFxixm8VhKVSsUBRyNWv8/s640/IMG_2747.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Potty training is going well we got our Buzz shirt . . . as for the rest of the outfit it is unexplainable</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvd7jadQZmFuTItus-QP7ORr1kF3uZVfGrBfB0FxQDty4Ccg3tvYgHWyhzCWX6tZ91Yo8de7pYBfJIjsL0gR0shRTymlyWXwhUHynhLlQiE3k3VC_INLPy0R9OkxkVk9jrryFVRnJ4Vc0/s1600/IMG_2722.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvd7jadQZmFuTItus-QP7ORr1kF3uZVfGrBfB0FxQDty4Ccg3tvYgHWyhzCWX6tZ91Yo8de7pYBfJIjsL0gR0shRTymlyWXwhUHynhLlQiE3k3VC_INLPy0R9OkxkVk9jrryFVRnJ4Vc0/s640/IMG_2722.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our Magnificent view from JD's room. Nate does not want me to take "fresh air" breaks knowing what it means for our wallet</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTbQLC2OJr-Hc_RkBofv8NUhTOLGNJOF_OuT52D-IW-oQFlca2ikQCIoyVhJ1h_bDWE7MFSTDFIO2wEarueqzoNLhK0ScVFUZErA_QIq8C474LrE-RlE5SD7YsESl1MMoXr7ywQFZqNZQ/s1600/IMG_2744.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="478" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTbQLC2OJr-Hc_RkBofv8NUhTOLGNJOF_OuT52D-IW-oQFlca2ikQCIoyVhJ1h_bDWE7MFSTDFIO2wEarueqzoNLhK0ScVFUZErA_QIq8C474LrE-RlE5SD7YsESl1MMoXr7ywQFZqNZQ/s640/IMG_2744.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">JD's Secret Service</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com0tag:blogger.com,1999:blog-1180946282070400491.post-28564232046751851272013-07-29T17:48:00.001-07:002013-07-29T19:18:55.748-07:00Post-Op Day 3: Foreshadowing <style>
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<div class="MsoNormal">
Remember back to English class when you learned about foreshadowing and how it will affect the rest of the story? For some foreshadowing
has always been one of my favorite pieces of story structure. In college I
wrote a paper on the numerous, unnoticed foreshadowing events in the movie <i style="mso-bidi-font-style: normal;">Back to the Future</i> (it was a riveting A+
piece of work). Yet, sometimes foreshadowing is so blatant it does not advance
the storyline but rather tells the end too soon. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If anybody were videotaping JD’s pre-op on Thursday with the
nurse practitioner (NP) then they would have seen blatant foreshadowing at it’s
best. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
During the pre-op, the nurse practitioner has the daunting
task of pointing out all the small percentages possible risks for surgery. Very
similar to how we handled those conversations while JD in the NICU I politely
put my fingers in my ears and hummed to myself until she moved on. We are not
being naive but rather keeping our brains clean of unnecessary worry. In the
medically complex world that is JD there are a lot of “<i style="mso-bidi-font-style: normal;">small chance</i>” percentages in everyday life. If we listened to each
potential challenge we would spend more time focused on <i style="mso-bidi-font-style: normal;">possible negatives</i> rather than enjoying the <i style="mso-bidi-font-style: normal;">actual positives</i>. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So as the NP was explaining the 1% chance of this or 10%
chance of that I barely listened. Yet, one risk stuck out, one risk grabbed my
attention, and one risk made me ask questions. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“During surgery there is a chance the thoracic duct could
get nicked or stressed in which case he would have Chylous effusions where the
fat drains into the chest. If this occurs he would have to be on a specialized,
low fat/fat-free formula diet until the body heals itself. Another risk . . . “
NP said so matter-of-factly. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“Whoa, whoa wait, can we go back and talk more about that duct
nicking thing?” I said with a bit of an edge. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">NP:</b> “Oh, of
course. We do not see it very often but it is possible during surgery. It
should not affect recovery but it is a risk we need to tell you about. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Me</b>: “How often do
you see the fat sacs nicked?” (I could not get over this idea of nicked fat
sacs)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">NP:</b> “Welllllll .
. . (big pause) we see it but not all the time. Without any data or support to
backup my facts I would say about 5 -10% of the time.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Me:</b> “Oh, I
thought you were going to say about 50% of the time.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">NP:</b> “No, not that
often. It really is very minor.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">“Yep, pretty sure that
will happen to JD” (I thought quietly in my head).</i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Anytime we are given a “<i style="mso-bidi-font-style: normal;">small
chance</i>” percentage we are slightly heighten in worry. Having a child with a
less than 1% syndrome pretty much throws out all other percentages.<span style="mso-spacerun: yes;"> </span>Recently, I was talking to another mom who’s
currently pregnant with #2 and whose first baby had a few “<i style="mso-bidi-font-style: normal;">small chance</i>” percentages complexities. We both agreed that we
chuckle when doctors tell us “well it is a less x% chance of happening.” Guess
what we have already encountered those “<i style="mso-bidi-font-style: normal;">small
chance”</i> percentage so this gives us no comfort. I actually think I would
have felt better had she said 50% of the time. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If you have not figured out where I am going with this I am
a terrible at foreshadowing. Last night around 8pm the night nurse noticed his
chest tube drainage appeared white and milky. When we told the nurse we had
started his food about 12 hours prior she said “yep, we need to send this to
the lab.” Blast! I knew it! Lab confirmed a heighten amount of triglycerides
meaning yes that <i style="mso-bidi-font-style: normal;">“small chance</i>”
percentage has taken over again.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This afternoon we slowly started JD on his detox cleanse –
it’s not really a detox cleanse but cleanses are super hip right now and it
just sounds cooler than specialized low-fat formula. As of this evening he is
not a fan of this formula, we have yet to get through a half his normal feed
without spitting up. Poor little man. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After pumping an extra full two weeks of milk and blending
an extra full week of his smoothie for post surgery it will all stay in the
freezer for now.<span style="mso-spacerun: yes;"> </span>For the next 6
week his diet will be a specialized formula to allow the body to heal itself.
This will include at least 4 additional appointments after the 6 weeks on top
of the other cardiac follow-ups. <span style="mso-spacerun: yes;"> </span>Good
grief!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Per usual, this did not sit well at first but then realized
of all the challenges we could/can encounter this is rather minor. The
disappointing part is he will have to keep his chest tube in for a few more
days until it has completely drained and it will extend our stay. We were
looking to be home by Wednesday (which was already a week earlier than we
planned) but we will keep him here until he is 100% ready to dominate the real
world . . . then we might as to stay one more day just in case <span style="font-family: Wingdings; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Cambria; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As for the rest of our checklist:</div>
<div class="MsoNormal">
*<span style="mso-tab-count: 1;"> </span>Working
on feeds with this new formula (not liking his celebrity cleanse)</div>
<div class="MsoNormal">
*<span style="mso-tab-count: 1;"> </span>IV
is out of his head</div>
<div class="MsoNormal">
*<span style="mso-tab-count: 1;"> </span>Hoping
to take the central line out of tomorrow</div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
*<span style="mso-tab-count: 1;"> </span>BIG
NEWS: dressing is off his incision and we have seen the first glance of his
badass zipper scar. </div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
*<span style="mso-tab-count: 1;"> </span>During
the day we are testing no nasal cannula and he loved. With no oxygen help his saturation
level was holding steady 96-100!!!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Overall, another stellar day for J-Doug. He is active,
moving around, rolling around, kicking his legs, punching his arms, and
enjoying being almost tube free. Once we get this cleanse under control he will
be a whole new man. Looking forward to snuggling with him once his chest tube
comes out in the next few days. Only 3 days post open heart surgery and this kid amazingly handsome!</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkBlp5fLAsw8qcYnzgiR-Zp85iMmWlY1iEQA251IZi-xua6LHJe2i-XRkGZsaAdmi3G2SRqnJhn6ApVx6zxQqM-Z_sNybNoyNa_9jRwoJbCz06Qw4wuG66u7npvRzlzLPT37oCsq7_sjo/s1600/IMG_5286.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkBlp5fLAsw8qcYnzgiR-Zp85iMmWlY1iEQA251IZi-xua6LHJe2i-XRkGZsaAdmi3G2SRqnJhn6ApVx6zxQqM-Z_sNybNoyNa_9jRwoJbCz06Qw4wuG66u7npvRzlzLPT37oCsq7_sjo/s640/IMG_5286.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">JD's crib is the place to be. Socks the Sock Monkey (from his godmother Lauren), Bravely the Lion (from the Rutlins) and DJ the Owl really spice up the party.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiou3YoclTTaWRPTpSxFWAPcEH7LRXXGHZyqqiloVbFIjpj2_ovcV_Llrp1dCSrTyWpAgoIwrQYrH1vlq22ybefnc7g-_TRPc-aMWPhs_mV4j7SeSJh3ySojiQS3LAJegZxZeWQmEen3P0/s1600/IMG_5289.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiou3YoclTTaWRPTpSxFWAPcEH7LRXXGHZyqqiloVbFIjpj2_ovcV_Llrp1dCSrTyWpAgoIwrQYrH1vlq22ybefnc7g-_TRPc-aMWPhs_mV4j7SeSJh3ySojiQS3LAJegZxZeWQmEen3P0/s640/IMG_5289.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chicks dig zipper scars and head band-aids</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLbQfcVg1PG2SFQKn779AKKovbuMm-DIiVfpnEy0juC-wBnJmakztw-pHx3xxy7RNmjOglwF4KEkbjGTYanFkeRYvkM-g0IYQomc908orc_sgpyFxIOhhtOnaKMrQaRwigvK97gNNfY1w/s1600/IMG_5299.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLbQfcVg1PG2SFQKn779AKKovbuMm-DIiVfpnEy0juC-wBnJmakztw-pHx3xxy7RNmjOglwF4KEkbjGTYanFkeRYvkM-g0IYQomc908orc_sgpyFxIOhhtOnaKMrQaRwigvK97gNNfY1w/s640/IMG_5299.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Agh, we just cannot get over how great he looks. Feeling on top of the world. Good as new.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh72mnBw_M4sv-xUlb53JB_XompNWEeGijRqQlU48Eeucl82JxOw6dcRAB8evJ3Q86bWsoPezVpHV-sZoKIZcDybBJA9Q0qYVhXvjMV-ki-kwYPgtDpV2Sh1u9o-UWKmh4azzt8jlhR62k/s1600/IMG_5280.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh72mnBw_M4sv-xUlb53JB_XompNWEeGijRqQlU48Eeucl82JxOw6dcRAB8evJ3Q86bWsoPezVpHV-sZoKIZcDybBJA9Q0qYVhXvjMV-ki-kwYPgtDpV2Sh1u9o-UWKmh4azzt8jlhR62k/s640/IMG_5280.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Seriously, it's pretty awesome looking</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGS93aZDZpa5W9cDLILm_6JwRmpE6KhwUhDdMeNNJ8UXYe8_9Nr9ZfyNyKUPxkR_RYD3KU9abMyhPXN7llxwtHYH_DpsbFKFUOR2Tz9PskF_fxIFMO_Y8TlRuQONq3WXKFCyuAO6OfyNk/s1600/IMG_5275.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGS93aZDZpa5W9cDLILm_6JwRmpE6KhwUhDdMeNNJ8UXYe8_9Nr9ZfyNyKUPxkR_RYD3KU9abMyhPXN7llxwtHYH_DpsbFKFUOR2Tz9PskF_fxIFMO_Y8TlRuQONq3WXKFCyuAO6OfyNk/s640/IMG_5275.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"So we put our hands up like the ceiling can't hold us . . ."</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com2tag:blogger.com,1999:blog-1180946282070400491.post-45053428055777009092013-07-26T19:05:00.001-07:002013-07-26T19:05:49.893-07:00DJ the Guardian Angel Owl
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<div class="MsoNormal">
Jessica Simpson was known for her love of Louis Vuitton
purses. Ellen DeGeneres is known for her sign-off “Be kind to one another” (makes
me smile every time). And JD’s NICU buddy Jackson was known for his owls. </div>
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<br /></div>
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Before he was born, Jackson’s nursery was fabulously
decorated full of owls with a modern twist. While Jackson only spent 48 hours
in his room owls became his calling card. Continuing to honor Jackson, his
parents have used the owl as the symbol of the <i style="mso-bidi-font-style: normal;"><a href="http://www.jacksonchance.org/" target="_blank">Jackson Chance Foundation</a>.</i></div>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig9jROABgF_I1QsIfyA1teEi4cwwRDyOpexFcAQ-bMXIYyd4ScIXy9MmFB6o7cgaYKALDmmHBBBZpwAWsvcwfjOQ9eEJQy6Ksov5P-0WhbWNLxzlq9_CSXkMaU3v8w6fpnr5a2P11oaoM/s1600/Picture+3.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig9jROABgF_I1QsIfyA1teEi4cwwRDyOpexFcAQ-bMXIYyd4ScIXy9MmFB6o7cgaYKALDmmHBBBZpwAWsvcwfjOQ9eEJQy6Ksov5P-0WhbWNLxzlq9_CSXkMaU3v8w6fpnr5a2P11oaoM/s1600/Picture+3.png" /></a></div>
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From the moment we met Jackson the Gawels have felt a very
special connection when we see owls. An owl hangs on JD’s IV pole (used for his
tube feeds). At Christmas we added an owl ornament to our family tree. And, we
felt it was a sign when we found a house we loved with an owl statue on the
front porch (we did not get the house due to a shady listing agent but it
pointed us the suburb we fell in love with). Every owl that comes across our
path makes us smile.</div>
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On July 26, 2013 as Dr. Cardiac Surgeon masterfully glides his
hands over JD’s heart, Nate and I sat in the family waiting room trying
desperately to pass the time. Nurses and doctors came in every 45 minutes to
give us updates but it was a quiet, little lady who gave us the emotional hug we
needed. </div>
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<div class="MsoNormal">
It was a simple canvas bag with red straps but it was full
of comfort. The bag was from an organization called <a href="http://www.mlhchicago.org/" target="_blank"><i style="mso-bidi-font-style: normal;">Mended Little Hearts</i></a> which provides support for families impacted
by congenital heart defects (congenital heart defects are defects of the heart
which are present at birth). Coloring books, children books, blankets, care
packs, and water bottles filled the bag but it was the stuffed owl that grabbed
my attention. </div>
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<br /></div>
<div class="MsoNormal">
The morning had gone pretty well as I had gotten most of my
tears out yesterday during our pre-ops (sitting in the x-ray waiting room
crying when the kid next to you with the broken finger looks at you with
judging eyes makes for a stellar morning).<span style="mso-spacerun: yes;"> </span>Few tears here and there this morning but I felt he would be okay so I was not worried.
However, when I opened the bag and saw the owl’s eyes staring up at me it was at that moment when I lost it. It was the first <i style="mso-bidi-font-style: normal;">official</i>
sign everything would be okay. Jackson had sent JD his owl to watch over him as
he went through surgery. </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjve8ZOc_zFZJ0thZPTGkoXM4GyO87ZNQv3sxKIE_nEsO4Xzx8xbecbqdPgDHMCOQKk8T8KkRjsTvrkDUibV-Ae4LWTMLP1Nxuh34Ba89xBC69CP8ZIig8iLizzbg1q7I-_40dXtXQbP-I/s1600/IMG_2711.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjve8ZOc_zFZJ0thZPTGkoXM4GyO87ZNQv3sxKIE_nEsO4Xzx8xbecbqdPgDHMCOQKk8T8KkRjsTvrkDUibV-Ae4LWTMLP1Nxuh34Ba89xBC69CP8ZIig8iLizzbg1q7I-_40dXtXQbP-I/s640/IMG_2711.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thank you Jackson</td></tr>
</tbody></table>
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</div>
<div class="MsoNormal">
I believe in angels. I believe those that are truly special
to us who are no longer on earth still play a part in our lives. The year
leading up to JD’s birth was a tough one on the family. My cousin lost her 5-month-old
son, Benjamin (Ben-G), in December 2011 due to a congenital heart defect (another 1 in
100,000 spontaneous incident). 5 days later we had our 20-week ultrasound telling
us something challenging was going on with JD. January 3, 2012 we received JD’s
diagnosis. January 10, 2012 my grandmother, my last living grandparent, passed
away at 93 years old. April 2, 2012 JD was born 4½ weeks early and started his NICU
stay. 9 days later my cousin Mike passed away at 41 years old after a long
illness. This all took place on my mom’s side of the family. It was a tough
year but through it all the family and JD continued to get stronger and
healthier and full of life. I believe those that passed before him starting
watching over him before he was even born. <span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today when I opened the bag to find an owl I knew once again
JD’s guardian angels were watching over him with Jackson as the leader. We
named him DJ the Owl (JD backwards<span style="mso-spacerun: yes;">
</span>. . . don’t worry it took me a second too when Nate announced it. “What
does DJ stand for?” Let me tell ya I am quick on my feet). My eyes drifted to the
stroller as I lifted DJ out of the bag. JD’s blue superhero cape attached to
the handle called to me. The cape was immediately placed around DJ’s neck
fitting perfectly as though it was a custom fit. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
DJ sat with me under my arm for the remainder of our time in
the waiting room. The owl received the place of honor at the foot of JD’s bed
with the cape remaining firmly around his neck. Jackson’s owl will keep the
cape warm as he watches over JD each day he is in the hospital. Once the tubes
are gone JD gets his cape back knowing it was taken good care.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixyMt5VPtd0Mk47EoHoJLYR_kW15Lna1jOAAj5yBmbcWghuS8jwggawR707ruwH4hBy8CrfewVD8JkI2WPQUqUvb8Oeoo_mbqffCHB3KFCPpMEUiKQGLEd3SttBRCDepaLquacRyVpJ4w/s1600/IMG_2716.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixyMt5VPtd0Mk47EoHoJLYR_kW15Lna1jOAAj5yBmbcWghuS8jwggawR707ruwH4hBy8CrfewVD8JkI2WPQUqUvb8Oeoo_mbqffCHB3KFCPpMEUiKQGLEd3SttBRCDepaLquacRyVpJ4w/s640/IMG_2716.jpg" width="480" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal">
Today we are thankful to all our angels watching over us especially
the youngest angels Jackson and Ben-G. The young ones always have the biggest wings.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As for the rest of the day, it went very well. Watching your
child being wheeled away is the hardest part . . . although watching the Today
show on a Friday in the summer is pretty brutal as well. Scary Spice was the
guest host for the 3<sup>rd</sup> hour and she showed up late. Live TV and she
walked in 11 minutes late while Al and Natalie filled time. BRU-TAL!</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh29v4VoV2eGtG_s-2-1vKXcTLnJ1yiiymQ9GJAFfJF3XseDT20ZGFSPuYP4f-40NbhMjGTg1SEWu_ToITzLdnbIs4kVmenQ6Xn3QxMpmshh71H0hs21LF2GdAaaXyh2rM-N2_hL9-k1Ho/s1600/IMG_2707.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh29v4VoV2eGtG_s-2-1vKXcTLnJ1yiiymQ9GJAFfJF3XseDT20ZGFSPuYP4f-40NbhMjGTg1SEWu_ToITzLdnbIs4kVmenQ6Xn3QxMpmshh71H0hs21LF2GdAaaXyh2rM-N2_hL9-k1Ho/s640/IMG_2707.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">JD's Superhero cape riding shotgun on the stroller</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2RfoWl6YCPTi26KSmO92MYsKzHgsXNd3tG8EOLIQYAb29FUp-ejhZijdQ4m1RTczFCgx5nlkdOAOKwufvzYfT5vLtdvqNvmKupN2OuV_35NFR5TgqOOmN_1i2R7LRREE0BD-EY1T9DZQ/s1600/IMG_5244.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2RfoWl6YCPTi26KSmO92MYsKzHgsXNd3tG8EOLIQYAb29FUp-ejhZijdQ4m1RTczFCgx5nlkdOAOKwufvzYfT5vLtdvqNvmKupN2OuV_35NFR5TgqOOmN_1i2R7LRREE0BD-EY1T9DZQ/s640/IMG_5244.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Every superhero has to have their cape within reach at all times</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxOKeECAesx0BkrbjIXZAf3sHrKBA9PKHjjVA5UC1H9tO5o0Dqn9-Z82jZtP-tDKiRUCx6M1MNdzMoi3X0a7BHLwJUgA_j1TRBJCDMYisONFl7cv2joIDgu2cB2Z0fRKetwAHh6WBkD9U/s1600/IMG_2709.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxOKeECAesx0BkrbjIXZAf3sHrKBA9PKHjjVA5UC1H9tO5o0Dqn9-Z82jZtP-tDKiRUCx6M1MNdzMoi3X0a7BHLwJUgA_j1TRBJCDMYisONFl7cv2joIDgu2cB2Z0fRKetwAHh6WBkD9U/s640/IMG_2709.JPG" width="478" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hmmm, not sure I like what's going on here</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5SRR00TR64rjJEsut3bW1ie9RoYkM3_97Yt61m3V5r91mZcsKxLc6tt6fblcK2_4k1vVJ_pAlLbuZBj7FzLhkahRz-8A6EzOXabu-cO6LS0UjCHQBKklaLX3eoEBZGGEtSPkzczfUHmc/s1600/IMG_2710.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5SRR00TR64rjJEsut3bW1ie9RoYkM3_97Yt61m3V5r91mZcsKxLc6tt6fblcK2_4k1vVJ_pAlLbuZBj7FzLhkahRz-8A6EzOXabu-cO6LS0UjCHQBKklaLX3eoEBZGGEtSPkzczfUHmc/s640/IMG_2710.JPG" width="476" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family selfie . . . JD's not impressed</td><td class="tr-caption" style="text-align: center;"> </td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgscufdrNY1HCuAs1FQoJQipSJh62cCKiO1Dqz2GTMQ37PS0JD_IcMTwei-144VSZov2MvXwMYIyOCdMnMbVZS0GwWBGzbaGbRORredP_mmMIOg8JC8hJ3LDnDK6_xACvX1VCuXP3TJCDM/s1600/IMG_5253.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgscufdrNY1HCuAs1FQoJQipSJh62cCKiO1Dqz2GTMQ37PS0JD_IcMTwei-144VSZov2MvXwMYIyOCdMnMbVZS0GwWBGzbaGbRORredP_mmMIOg8JC8hJ3LDnDK6_xACvX1VCuXP3TJCDM/s640/IMG_5253.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Daddy rarely gets the pics with JD and I love this one</td></tr>
</tbody></table>
<div class="MsoNormal">
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Short details:</div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span>The breathing tube went in easy peazy.</div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span>JD does not give up his veins very well so they
had a hard time getting his IV and central lines in. Looking closely at his
hands and feet and neck you will find lots of tiny little sticks where they
tried with no success (or a vampire had a yummy meal). Finally they had to
perform a “cut down” where they cut a tiny section open (this was in the ankle)
to see exactly where the artery is located. Success!! </div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span>He now has an arterial line in his ankle, a
central line in his groin, and an IV in his head. Yep, in his head. Hilarious.
Every time they take blood the phlebotomists (the techs who draw blood) always
say “too bad we can’t take it from his head because he has great veins up
there.” Looks like they finally got their wish.</div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span>Once on the heart/lung bypass machine (yikes) it
was smooth sailing. First thing every doctor says as he enters the room “it was
a large ASD. A very large ASD. But is now completely closed and the heart looks
great.” YAY! </div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span>Post surgery echos and tests showed:</div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-family: "Courier New"; mso-bidi-font-family: "Courier New"; mso-fareast-font-family: "Courier New";"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";"> </span></span></span>Great
pressure levels</div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-family: "Courier New"; mso-bidi-font-family: "Courier New"; mso-fareast-font-family: "Courier New";"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";"> </span></span></span>The
heart quickly started to shrink (with the extra blood shunting through the
heart it created a larger right chamber with the extra pressure) which pleased
the doctors as it got smaller</div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-family: "Courier New"; mso-bidi-font-family: "Courier New"; mso-fareast-font-family: "Courier New";"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";"> </span></span></span>No
residual shunting through the atrial septum . . .meaning the hole closed
completely – they use a small part of the pericardium sack surrounding the heart to close the
hole. They sew it in over the hole then the body grows new cells around it
securing it in. Kinda cool huh. It’s like Science Fiction stuff only it’s real
life</div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-family: "Courier New"; mso-bidi-font-family: "Courier New"; mso-fareast-font-family: "Courier New";"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";"> </span></span></span>High
fives all around, the procedure went very well. All the doctors said this will
make him even stronger during the winter cold season</div>
<div class="MsoListParagraphCxSpLast" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-family: "Courier New"; mso-bidi-font-family: "Courier New"; mso-fareast-font-family: "Courier New";"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";"> </span></span></span>Currently,
he is comfortably sedated with the breathing tube and chest tubes (used to
drain the excess fluid) still in. The goal is to wean him from the breathing
tube tomorrow. Take the chest tubes out by Sunday and hopefully slowly start
feeds by tomorrow. I pumped two extra weeks worth of milk to freeze for post
surgery to ease him back into his feeds. </div>
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That’s about it. Seems pretty anti-climatic which is how we
want it. JD’s crib is decorated with pictures of Connor, Mom & Dad, his
godparents, and David DeJesus. Hoping Lord Stanly makes another trip to the
hospital now that he is back in Chicago for the convention. Gawel Family Cup watch is still on the list all the way until the new season starts up!</div>
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<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBJ4NBCqgvNBQQRUcw7TMxjL0XW6_Qvu1yF04YwX-BJE94acUE1RuYexNeDMubkfm5GkyZWGvXhcrNMInGaa8KYPhRfFmPnVYvlSD4arF240XrNaG1HrScTZt6AOGctmy5ee7luDAX2hM/s1600/IMG_2720.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBJ4NBCqgvNBQQRUcw7TMxjL0XW6_Qvu1yF04YwX-BJE94acUE1RuYexNeDMubkfm5GkyZWGvXhcrNMInGaa8KYPhRfFmPnVYvlSD4arF240XrNaG1HrScTZt6AOGctmy5ee7luDAX2hM/s640/IMG_2720.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">MTV Cribs CCU Style</td></tr>
</tbody></table>
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<br /></div>
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Nate and I had planned to camp out here over the weekend.
But, these rooms are set up like NICU rooms, no pull out bed, no private bathroom,
and no TV. Plus, they have a strict one parent can sleep bedside rule even
though both parents can be here 24/7. Strange. Soooooooo, tonight Nate and I
sleeping in shifts. One gets the comfy chair while one gets the rocker. Long
night but totally worth staying with the munchkin.</div>
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<br /></div>
<div class="MsoNormal">
Appreciation, gratitude, thanks, and glee are just a few of
the words to describe how amazing Team JD has been over the past few days. The
prayers worked, the hilarious distraction topics you sent worked, and the
loving support worked to keep us wrapped in a hug all day long.</div>
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Sweet dreams and good-night!</div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com6tag:blogger.com,1999:blog-1180946282070400491.post-71166163412284157962013-07-24T16:12:00.001-07:002013-07-24T16:12:17.932-07:00The Gawel Superhero Justice League: One Year Later
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<i style="mso-bidi-font-style: normal;">Side note: A few
people have asked if they can forward our blog to friends, family, or post it
on Facebook. The answer is always yes. When we first received JD’s diagnosis it
was through other families’ blogs we found comfort exploring the life of WHS.
From one blog to the next they all had different stories and each story helped
us as we moved into the next stage of understanding. </i></div>
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<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">When we decided to
write a blog we discussed making it public or private, only for close friends
and family. However, if not for other families opening their hearts with each
post we might not have found the reassurance we were looking for in those first
few weeks. To pay it forward we have happily shared our blog with anyone who
wants to read more about a brave little man, his rascally big brother, and two
average parents. Even if it only brightens one person’s day or helps one parent
let out a big sigh of relief then we feel we have paid it forward.<span style="mso-spacerun: yes;"> </span>And to the rest of you, at least you
get to see some pictures of two very handsome little men.</i></div>
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<br /></div>
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<i style="mso-bidi-font-style: normal;">Please feel free to
pass it along as we love telling JD’s story.</i></div>
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Quick recap for the new readers. Read the { } as our summed
up thoughts along the way:</div>
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<br /></div>
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<i style="mso-bidi-font-style: normal;">At our 20-week ultrasound
with our second son the doctor found a few anomalies {what?!?} sending us to a
Level II ultrasound {scary}. During the Level II ultrasound they found more
anomalies including a hole in the spine, which could mean Spina Bifida {okay,
super scary}. After an amniocentesis at 21 weeks we received the news we were
having a baby boy {YAY} with a very, very rare genetic syndrome called
Wolf-Hirschhorn Syndrome {is this real life?}. </i></div>
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<br /></div>
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<i style="mso-bidi-font-style: normal;">JD was born at 35½
weeks at 3½lbsish {the doctors literally put an –ish on his weight} and was immediately
transported to Children’s Memorial in Lincoln Park {sad mommy stayed at the
hospital alone}. 48 hours later doctors told us the hole in the spine was only
a dimple therefore no Spina bidifa {rejoice – yay}. Over the next 3½ months JD
spent his time growing, feeding, and getting stronger. Finally, on July 24<sup>th</sup>
he left the NICU to join our family at home. </i></div>
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<br /></div>
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<i style="mso-bidi-font-style: normal;">Over the past year we
have had anywhere from 2 – 10 appointments each week with over 17 different
specialists, doctors, and therapists. Each day JD gets stronger and healthier
proving life takes us down new paths that might start out scary but end
brighter than we ever imagined.</i></div>
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<br /></div>
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Helpful posts to get the whole story:</div>
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<a href="http://www.growingupgawel.blogspot.com/p/from-beginning.html" target="_blank">From the Beginning</a></div>
<div class="MsoNormal">
<a href="http://www.growingupgawel.blogspot.com/2012/04/james-douglas-gawel-is-here.html" target="_blank">James Douglas Gawel is Here</a></div>
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<a href="http://www.growingupgawel.blogspot.com/2013/01/wolf-hirschhorn-syndrome-one-year-later.html" target="_blank">Wolf-Hirschhorn Syndrome: One Year Later</a></div>
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<a href="http://www.growingupgawel.blogspot.com/2013/03/profile-of-handsome-boy-part-1.html" target="_blank">Profile of a Handsome Boy - Part 1</a></div>
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<a href="http://www.growingupgawel.blogspot.com/2013/03/profile-of-handsome-boy-part-2.html" target="_blank">Profile of a Handsome Boy - Part 2</a></div>
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<a href="http://www.growingupgawel.blogspot.com/2013/05/profile-of-handsome-boy-part-3.html" target="_blank">Profile of a Handsome Boy - Part 3</a></div>
<div class="MsoNormal">
<a href="http://www.growingupgawel.blogspot.com/2013/05/profile-of-handsome-boy-part-4.html" target="_blank">Profile of a Handsome Boy - Part 4</a></div>
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</div>
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On to the main post . . .</div>
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******************</div>
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On July 24, 2012, one year ago today, James Douglas left Lurie’s
NICU for the second and final time. When he was born on April 2, 2012 he was
3lbs, 8oz. When we left on July 24, 2012 he was 9lb 0.6oz. And on July 24, 2013
he is nearly 19½ lbs. </div>
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<br /></div>
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We are not surprised. We are not amazed. We had faith with
all our hearts that he would be extraordinary in his life. By 15 months he is
rolling from side to side, sometimes he rolls to the belly and sometimes he rolls
on the back. Working on shoulder strength, neck strength, and eating orally are
the short-term goals. Long-term goals for the year are very aggressive . . .by
Christmas we would love to see him sit up on his own –yikes! Even babies and
stay at home moms have PMPs (I cannot for the life of me remember what PMP
stands for but they were the fancy name for our work goals). </div>
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</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrvghzJjEyzsG4WoA8KuJO-GfLx7zddn2oea4t3v0xq0CRgfEyYvJYF9H9EjAd0EvtIcmeTxOmJt4mfcN0Ld-3zS6NXGh2NyVANACQAo4_3Nhwd9rETbujEvWU7r0XydNSqfQcmQfO6Fw/s1600/IMG_1754.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrvghzJjEyzsG4WoA8KuJO-GfLx7zddn2oea4t3v0xq0CRgfEyYvJYF9H9EjAd0EvtIcmeTxOmJt4mfcN0Ld-3zS6NXGh2NyVANACQAo4_3Nhwd9rETbujEvWU7r0XydNSqfQcmQfO6Fw/s400/IMG_1754.jpg" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">July 2012</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDB-56CP_qkq-rDzFAuTLGT4Q-ERzrSmwaiSOZvt_fvqo3WdbSTdghLzVzQb0cgEPPsOouFllONovIgxzRlQ3d_icsY6TXgPX_vnbj-mEQSZRuX49Nx5xOs1QwymVVkAiRLuLuwlMGYpE/s1600/photo-1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDB-56CP_qkq-rDzFAuTLGT4Q-ERzrSmwaiSOZvt_fvqo3WdbSTdghLzVzQb0cgEPPsOouFllONovIgxzRlQ3d_icsY6TXgPX_vnbj-mEQSZRuX49Nx5xOs1QwymVVkAiRLuLuwlMGYpE/s400/photo-1.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">July 2013</td></tr>
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With JD’s surgery coming up we have had some wonderful
experiences and lots of family time. This past weekend we had a family photo
shoot (if you know you me then you know I LOVE a good photo shoot – even though
I am the least photogenic person you will ever meet . . .not everyone can be
Barney Stinson or Joanna Rutlin). But this photo shoot had a theme –
superheroes . . .</div>
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<br /></div>
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One warm spring afternoon in April I received a package from
a Seattle address. As I walked up the stairs opening this mysterious package I
pondered who sent us something. When the package was open tears started
streaming down my face. In my hand were two bright blue superhero capes. One
with a C and one, just a bit smaller ,with a J . . . both with yellow lighting
bolts striking through the letters. It was at that moment my boys officially
became Tiny Superheroes.</div>
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<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMTL4znSocxHuWbfP_RPS5_Mu93L2aEnYV4Iv3wfCUVIHqylZjVhka-Zk9iVonl-ByHVdXM8x0Vfe_R3CDlW7NzNzCU0BcPw-p1WzhHZ0Zzt25TYvsmlysWY6-M-AnZEjZTsfZWk9RjvM/s1600/IMG_2271.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMTL4znSocxHuWbfP_RPS5_Mu93L2aEnYV4Iv3wfCUVIHqylZjVhka-Zk9iVonl-ByHVdXM8x0Vfe_R3CDlW7NzNzCU0BcPw-p1WzhHZ0Zzt25TYvsmlysWY6-M-AnZEjZTsfZWk9RjvM/s640/IMG_2271.JPG" width="640" /></a></div>
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A few months back I had noticed a post about this remarkable
woman who started off by making a superhero cape for her son and nephew and
ended up creating her own Justice League. Robyn Rosenberger, founder of Tiny
Superheroes, sews superhero capes for children who fight harder everyday than
the rest of us. Through her website you can nominate a Tiny Superhero to
receive a cape so everyone knows what a true superhero looks like. </div>
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<br /></div>
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Who nominated JD and Connor? One of my oldest, dearest
friends, Dawn, whom I have known since 7<sup>th</sup> grade {yikes} saw the
same post and thought immediately about JD. Knowing JD had his upcoming heart
surgery Dawn wanted to give JD a little gift to show him we all know he is a
superhero. However, it did not stop there. Dawn also knows what an amazing big
brother Connor is to JD (and will forever be); she felt he deserved to be
recognized as a superhero as well. </div>
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<br /></div>
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At the same time, completely separately, another friend,
Andi, had recently started her own photography business. In doing so she finds
ways to donate her time to some special causes. Once she heard about Robyn and
her Tiny Superheroes, Andi reached out to let Robyn know she would happily do a
family photo session if any suoerheroes were nominated in the Chicagoland area.
When Andi found out it was the Gawel family, she was pumped. Andi is a member
of Team JD and has been following him from the beginning making this an “honor”
(her words) to photograph the family.</div>
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This past weekend we had our superhero family photo shoot.
Less than a week before JD’s surgery we ran around Lincoln Park Zoo as a family
watching as the capes waved in the wind. </div>
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<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQdcf_AEcBvwRbpaaApss2FgfLR-Q3IeLyy7SxSxiSvaNehbpv-DvAUwwQejiqyb6K9L_kmna-sZd95z_2PiJfmFv70HMem4mu97AnYnJnmFjlYvG4njEeYY-LA7aJ12hU5bDSxGVTt94/s1600/DSC_0026.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="512" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQdcf_AEcBvwRbpaaApss2FgfLR-Q3IeLyy7SxSxiSvaNehbpv-DvAUwwQejiqyb6K9L_kmna-sZd95z_2PiJfmFv70HMem4mu97AnYnJnmFjlYvG4njEeYY-LA7aJ12hU5bDSxGVTt94/s640/DSC_0026.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love this little guy ever so much!!!!!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeeMtWD9B1neXIt6NTW1z4fHM9aqEqZS6hF3j9CTeViP9f8bLGGL07o7zbU1Sd1UemxXjAqrvsgfr0yS77OPd3k_m7Wokwcxw1L05z6L7f4ExLNGoSwkz9xvmHTnuSXYhqyCGhdedTGMY/s1600/DSC_0092.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeeMtWD9B1neXIt6NTW1z4fHM9aqEqZS6hF3j9CTeViP9f8bLGGL07o7zbU1Sd1UemxXjAqrvsgfr0yS77OPd3k_m7Wokwcxw1L05z6L7f4ExLNGoSwkz9xvmHTnuSXYhqyCGhdedTGMY/s640/DSC_0092.jpg" width="512" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Protecting his brother everyday</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJS2hPc7mfJavVc1UqMtZzGKlrl5_uimRnvSBYATI3Ki-TIhvnYtoYp6ugZQ8yQLsaZWcXmw7SaJSaM7Mmm2_K7Fid4EdRGRavoybL7VkkQ8FDdmly8kMYwd5o4TqHcIRxJDm2IMPxawQ/s1600/DSC_0051.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="512" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJS2hPc7mfJavVc1UqMtZzGKlrl5_uimRnvSBYATI3Ki-TIhvnYtoYp6ugZQ8yQLsaZWcXmw7SaJSaM7Mmm2_K7Fid4EdRGRavoybL7VkkQ8FDdmly8kMYwd5o4TqHcIRxJDm2IMPxawQ/s640/DSC_0051.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gawel family favorite spot in all of Chicago</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGevlpkauGjiW0MFw36Px8BbsLJKkk6KR0Tk08gbk4UW114zuBwoIPhijsvT1n8tkZnbjXf3GrDO83EfnqcSlbwu8yhsfmVp9zCMK9R_lcJgQa3JLetk8WGjXHYppfTX6cuACVIHbbcB4/s1600/DSC_0054.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="512" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGevlpkauGjiW0MFw36Px8BbsLJKkk6KR0Tk08gbk4UW114zuBwoIPhijsvT1n8tkZnbjXf3GrDO83EfnqcSlbwu8yhsfmVp9zCMK9R_lcJgQa3JLetk8WGjXHYppfTX6cuACVIHbbcB4/s640/DSC_0054.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tiny Superheroes with big hearts</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLBTx9reEA2MflmeZ9vweVB07DpunCnF9bXXmoWc9p1jmmoXJbV9gIaAf-Gr40G7gYQpU1YR19RFUc1DEI18kEsL11mjGw9gAx1jtn8ZtcuelLUD7QW7fU0RkKU-nKoJbsbK2R7P411bI/s1600/DSC_0106.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="512" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLBTx9reEA2MflmeZ9vweVB07DpunCnF9bXXmoWc9p1jmmoXJbV9gIaAf-Gr40G7gYQpU1YR19RFUc1DEI18kEsL11mjGw9gAx1jtn8ZtcuelLUD7QW7fU0RkKU-nKoJbsbK2R7P411bI/s640/DSC_0106.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMPcvtN-hyVj9Uc63WMXsDUwanrX9BkCapmFyE48fIoYizOhiFNQaBnmY18apWW3iGt8hdZmgCRWBidRq6ymQZkQCRL45GtJVv2NUmFjX93n-YLPNUujHrB7STe5gsIqmVa_-JRq-4yiw/s1600/DSC_0147.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMPcvtN-hyVj9Uc63WMXsDUwanrX9BkCapmFyE48fIoYizOhiFNQaBnmY18apWW3iGt8hdZmgCRWBidRq6ymQZkQCRL45GtJVv2NUmFjX93n-YLPNUujHrB7STe5gsIqmVa_-JRq-4yiw/s640/DSC_0147.jpg" width="512" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Love this family shot!!!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-VjsEkEySrNJPsNTT90Cd0eLocRSdKxaMwUNf8pskid_pyJJdBB3llFZJln9k4ub0m6EfhMkdHvSadkxs0gk8COrn7kMzHzmvr16I_4SHah3v6qv7kc54G3So8k1f2_R4r5EKuYtmmk0/s1600/DSC_0191.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="456" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-VjsEkEySrNJPsNTT90Cd0eLocRSdKxaMwUNf8pskid_pyJJdBB3llFZJln9k4ub0m6EfhMkdHvSadkxs0gk8COrn7kMzHzmvr16I_4SHah3v6qv7kc54G3So8k1f2_R4r5EKuYtmmk0/s640/DSC_0191.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Moving out of the city very soon but we will miss this gorgeous city</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjitHOv_cnZPV5libPlo8r50ctD-vryMRGEJ24lDCa9vcJvCmdlCPoFuGo-y3QQV91QiLgqWNr_mgP97RFNTxYFdRz9j66M2ze5VZ-CqFkdmWQpsxDccNWePYK30iU03w2b4WelgfkMAHs/s1600/DSC_0067.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="512" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjitHOv_cnZPV5libPlo8r50ctD-vryMRGEJ24lDCa9vcJvCmdlCPoFuGo-y3QQV91QiLgqWNr_mgP97RFNTxYFdRz9j66M2ze5VZ-CqFkdmWQpsxDccNWePYK30iU03w2b4WelgfkMAHs/s640/DSC_0067.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brothers talking about life</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4aAice9AA4qCZHVhZioUxS6i2hjKCErRt6-GErWDDum2ETKq9D6hR07ENH3ebEBOr128bKhenqwiFvpiShzOW9PExeHXN6Xg04u8mt_PsNFuPDAaLW-jCewQwcGAtZn5xcgt7Ml524p8/s1600/DSC_0063.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="512" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4aAice9AA4qCZHVhZioUxS6i2hjKCErRt6-GErWDDum2ETKq9D6hR07ENH3ebEBOr128bKhenqwiFvpiShzOW9PExeHXN6Xg04u8mt_PsNFuPDAaLW-jCewQwcGAtZn5xcgt7Ml524p8/s640/DSC_0063.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Handsome boys</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibp0hl4_rtHpj8grfJIwa0TeqHK54LyshN0whWPrCJtyoW60_vP7ktsinh152SMh9tkSJrR9U4MdS3X7OzvpdozXddjzXm5ye8q6c5dSajEoovDhlgqtUZjqqBKOapn8EYieWp70sgn88/s1600/DSC_0238.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="456" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibp0hl4_rtHpj8grfJIwa0TeqHK54LyshN0whWPrCJtyoW60_vP7ktsinh152SMh9tkSJrR9U4MdS3X7OzvpdozXddjzXm5ye8q6c5dSajEoovDhlgqtUZjqqBKOapn8EYieWp70sgn88/s640/DSC_0238.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pondering life . . . or his Fantasy Football Team</td></tr>
</tbody></table>
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTu2gBPFrOlRhGpITm5xQwMN9-bDtoiBqXSoUyCuENLcGfwKPAq1Eh4QEwQB-9urd9WmD0kO3_fuiNtTspFE5YuSzPP7hcqKanNz0wpmElyJORJIF-nRwbt_GLCc49KtmhOwIj_EvK1_I/s1600/DSC_0221.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="456" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTu2gBPFrOlRhGpITm5xQwMN9-bDtoiBqXSoUyCuENLcGfwKPAq1Eh4QEwQB-9urd9WmD0kO3_fuiNtTspFE5YuSzPP7hcqKanNz0wpmElyJORJIF-nRwbt_GLCc49KtmhOwIj_EvK1_I/s640/DSC_0221.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Superheroes take breaks too</td></tr>
</tbody></table>
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiNOQ3W7PtI89-zWmqMQeeekngDzE5gn-GSXgr2lO8xkZvnKoC2rL_IPB6YAg_p4-vYL2UC5qXVhouL9sqm_l5TFz-xjZjVvZ3MlqMi518uBSPllXdAEi8JPHmftQE6wjCiV71jAadDDg/s1600/DSC_0264.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiNOQ3W7PtI89-zWmqMQeeekngDzE5gn-GSXgr2lO8xkZvnKoC2rL_IPB6YAg_p4-vYL2UC5qXVhouL9sqm_l5TFz-xjZjVvZ3MlqMi518uBSPllXdAEi8JPHmftQE6wjCiV71jAadDDg/s640/DSC_0264.jpg" width="512" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My all time favorite picture of our Superheroes - tears every single time I see it</td></tr>
</tbody></table>
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<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal">
As I have sat, staring at my computer over the past few
weeks trying to form the words to write the final post before surgery I kept
coming back to the blue capes. Initial research on Wolf-Hirschhorn had us
thinking JD would be in surgery numerous times over his first few years. It
also told us we would be crying a lot as our baby struggled through life. Yet,
those statements are not true. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
JD had one very minor surgery at 3 months for his G-Tube
placement – 45 minutes done and done. That’s it. No more. Most of JD’s challenges
have improved or gone away completely. His kidneys look great, his eye sight
has greatly improved, he breathes better than they ever imagined, he weighs way
more than expected, he eats like a champ, and most of all his heart is strong.
Of all heart issues you can have, ASD surgery is the most minor. A friend’s son
had a 7 hour open heart surgery, JD’s surgery all in (prep, set-up, anesthesia,
heart, etc) should be completed in 4 hours. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
James Douglas has enjoyed every day of his life. Connor has
loved helping his brother get stronger everyday. Nate and I have found our
dream family with two adorable little boys who will grow up into strong men
(and mostly like become besties with Prince George of Cambridge).</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There is so much to say before JD’s surgery and yet not
enough words. Thank you to EVERYONE who follows JD and Connor’s stories. Thank
you to EVERYONE who emails, texts, calls, sends telegrams on a daily basis. We
smile everyday knowing there is a world out there that loves our boys. Connor
has never been so popular given how many people offer to hang out with him. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I cannot say it enough. Thank you for loving JD and learning
about his world. It seems foolish now how worried we were that people would not
accept him in their lives. In fact, I think JD makes us more popular. People
like us more because of JD. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And a very special thanks to the following people:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thank you to Dawn for thinking of our little guys and
honoring them with such an extraordinary gift.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thank you to Robyn and her <a href="http://tinysuperheroes.com/" target="_blank">Tiny Superheroes</a> team for giving
JD the cape that matches his super powers.<span style="mso-spacerun: yes;"> </span>Even if you do not know someone who needs a superhero cape
you can still donate or sponsor some little munchkin who deserves to join the
Justice League.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thank you to Andi for taking time away from your beautiful
family on a gorgeous Saturday morning to spend time with the Gawels. As we go
into lockdown for recovery during the month of August we can look back at those
pictures again and again to relive our joyful Saturday morning.<span style="mso-spacerun: yes;"> </span>Check out more of Andi’s work <a href="http://alwaysadorable.zenfolio.com/">http://alwaysadorable.zenfolio.com/</a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Nate and I will do our best updating Team JD throughout the
day on Friday, July 26. However, if we go for a few hours without an update please do not
think something is wrong. There is a chance we are trying to keep ourselves
busy by watching old TV shows on Netflix. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One more quick shout out . . .our family photographer, <a href="http://www.jordanntomasek.com/#/page/8c7e/photography/" target="_blank">Jordann Tomasek</a> took a few shots of the boys before we left our condo in May leaving us with such great memories.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2kM-l7xeYEdCERPPlAcYzYJPOws2RPelF4rwOnU2VnAueV_kb_acF2eNodWMwPntqnqLLvlAjPMgP2zso4-xCzJ3viI1ouaHYUY2QdgEjk-s4NK5FTudh7JUNNRiIdd7aCQ7Q0OfWwWc/s1600/Gawel-374+3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="228" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2kM-l7xeYEdCERPPlAcYzYJPOws2RPelF4rwOnU2VnAueV_kb_acF2eNodWMwPntqnqLLvlAjPMgP2zso4-xCzJ3viI1ouaHYUY2QdgEjk-s4NK5FTudh7JUNNRiIdd7aCQ7Q0OfWwWc/s320/Gawel-374+3.jpg" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBxJpO0X5UiEcWaVZP-SVAXCyV2-DTfzWkdUQlOa8HYKCycf81VJB5WSWnSKY0clnny-BZx9JJuX9gQuF3DzUKBJKXcu_LlSNZtWMTnV0Z8MpyaAg0ayn8KD8CBwquxkVqkZMKepVzw1g/s1600/Gawel-377+3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBxJpO0X5UiEcWaVZP-SVAXCyV2-DTfzWkdUQlOa8HYKCycf81VJB5WSWnSKY0clnny-BZx9JJuX9gQuF3DzUKBJKXcu_LlSNZtWMTnV0Z8MpyaAg0ayn8KD8CBwquxkVqkZMKepVzw1g/s320/Gawel-377+3.jpg" width="213" /></a></div>
<br />
<div class="MsoNormal">
Hugs and Love</div>
<div class="MsoNormal">
-The Gawels</div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com3tag:blogger.com,1999:blog-1180946282070400491.post-2173283141710098512013-06-29T11:01:00.002-07:002013-06-29T11:01:50.250-07:00A Family of Four: One Year Later
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u>June 6, 2012</u></i></b></div>
<div class="MsoNormal">
The Gawel household was preparing for the arrival of our
second little boy coming home. We were giddy with excitement for Connor to meet
his little brother for the very first time after 2 months and 5 days living at
the Children’s Memorial. I spent half of the day at the hospital going over
last minute items with the nurses and doctors. The other half of the day was
spent organizing the mass amount of medical supplies being delivered from our
home healthcare services.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx9Fi4fTL4nO89aMp253J2TuWf0msmGvj3xfyaWYs8Nus5RTbnBEYJWWWolYpdsC1pWw02q-rGwH9OWUDMipsk73T8y4hz7Cvy2o2ZUuto_tYpqCQ5Fkn0c0FvZVNAOEDf_vrS1hlv3aQ/s1600/IMG_0678.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx9Fi4fTL4nO89aMp253J2TuWf0msmGvj3xfyaWYs8Nus5RTbnBEYJWWWolYpdsC1pWw02q-rGwH9OWUDMipsk73T8y4hz7Cvy2o2ZUuto_tYpqCQ5Fkn0c0FvZVNAOEDf_vrS1hlv3aQ/s640/IMG_0678.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Car seat test one day before departure</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqgyfKzIoi0Cz0czBIXU8w5g0nSgLR37vlPnk4M57qcVy5bh7A7ANUuy9F1GeTid0eecHvfnohJqEIPiBdNq2m57OcsRizfdaRzi2YGeiPPBla9rXO3m5Cl8QIC1Ukmukfyhyphenhyphenoh8td3fg/s1600/IMG_0978.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqgyfKzIoi0Cz0czBIXU8w5g0nSgLR37vlPnk4M57qcVy5bh7A7ANUuy9F1GeTid0eecHvfnohJqEIPiBdNq2m57OcsRizfdaRzi2YGeiPPBla9rXO3m5Cl8QIC1Ukmukfyhyphenhyphenoh8td3fg/s640/IMG_0978.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just a fraction on the medical supplies delivered</td></tr>
</tbody></table>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u>June 6, 2013</u></i></b></div>
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I arrived at the Illinois Center to meet my friend Carrie on
the first floor before making the trek up to The MIX studios on the 27<sup>th</sup>
floor. Carrie is my dear friend who started the Jackson Chance Foundation to
honor her son Jackson’s (also known as Little J) legacy.<span style="mso-spacerun: yes;"> </span>Carrie and I were invited to record our
stories about our boys and our friendship for a local Chicago radio show called
The Eric & Kathy Show. Does that sound familiar?</div>
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If you go back to September 7, 2012 you may remember the
Eric & Kathy Radiothon benefiting Lurie’s Children’s Hospital. The
radiothon started around 5:30am about an hour after JD’s first buddy, Jackson/Little
J, passed away which I detailed <a href="http://www.growingupgawel.blogspot.com/2012/09/life-is-story.html" target="_blank"><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">here</i></b></a>. The Eric & Kathy Radiothon
allowed Jackson to be celebrated and honored on the day he entered heaven. </div>
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9 months later we sat in a recording studio opposite Eric
and Kathy sharing what Lurie’s means/meant to us while we spent many hours at
our kids bedside. Looking back I never realized just how much time we spent at
the hospital. It was a full time job traveling to and from the hospital while
at the same time making sure Connor was not feeling the changes. Was it a lot
of work? Yes! But at the time it did not feel like a lot of work. It was what you
do as a parent. You love your children as much as you can in the best possible
way you can.</div>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u>June 7, 2012</u></i></b></div>
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I woke up so energized knowing my two little buddies would
get to meet today. <span style="mso-spacerun: yes;"> </span>The excitement
for the boys to meet helped mask the fear of taking care of JD without the help
of doctors or nurses. Yes, there was a little fear knowing the tube running
down his throat had to be in the exact right position or I could potentially
drown my son from the inside (okay maybe not that dramatic but it sure felt
that way). </div>
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The<a href="http://www.growingupgawel.blogspot.com/2012/06/welcome-home-james-douglas.html" target="_blank"> post from June 7, 2012</a> helps sum it up.</div>
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My favorite part of the day was the moment when Connor ran
to the backdoor with the Pokey Little Puppy stuffed dog he picked out for JD.
As he set it gently into the infant carrier he looked up at us with a large
smile and said “Hold it, please” as he tried to slide his hands under JD. No
matter what sort of rascally things Connor does towards JD in the future I will
always know he loved his brother from the first moment he laid eyes on him.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZIUriPHttjKKuo71g2A0Qfx9U5fz-uSo6ryqEzKadDVZ9mxV3xIHkln4wsec89M6k3NGdfOfLrsITk8tnvPzh9oZ8ToELIFTZoXbnaqJH6VBBp_OGzKPm0MNh0Wt-yMbM2KTkj5WutoU/s1600/IMG_1212.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZIUriPHttjKKuo71g2A0Qfx9U5fz-uSo6ryqEzKadDVZ9mxV3xIHkln4wsec89M6k3NGdfOfLrsITk8tnvPzh9oZ8ToELIFTZoXbnaqJH6VBBp_OGzKPm0MNh0Wt-yMbM2KTkj5WutoU/s640/IMG_1212.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Gawel brothers finally together</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL_TMOEiIwhbF2b1rS0xje5nUhNnQts9J_4Ab_jav16WcqpS4YE3GMGrhkRS3SkKKCYCKPO9_AhhKd0OEQwN2Pt4n1OulGXLgKcNbY6hb6pEE1-D0JmPz__0DHY0J2m1yQowpS9ZK8G4M/s1600/IMG_1250.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL_TMOEiIwhbF2b1rS0xje5nUhNnQts9J_4Ab_jav16WcqpS4YE3GMGrhkRS3SkKKCYCKPO9_AhhKd0OEQwN2Pt4n1OulGXLgKcNbY6hb6pEE1-D0JmPz__0DHY0J2m1yQowpS9ZK8G4M/s640/IMG_1250.jpg" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First night sleeping comfy at home</td></tr>
</tbody></table>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">June 7, 2013</i></b></div>
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Our pediatrician Dr. D is pretty dope! </div>
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During our April appointment I showed Dr. D the boys Opening
Day picture which is adorable (I mean how could you not love this pic)</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_-AS0K5wQ5eY914rQe5LxwXfi7hvWtS6_I7XpCqVKYjIy-atxE3kzSUkNd6lxnLoY8IIVc3wqHOU9-s1TUrVncl4KvP3QjRODSWY3l508wcN5o_edL-3ZDv7QJdGI20hCIrMNSnEvSm4/s1600/IMG_2242.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_-AS0K5wQ5eY914rQe5LxwXfi7hvWtS6_I7XpCqVKYjIy-atxE3kzSUkNd6lxnLoY8IIVc3wqHOU9-s1TUrVncl4KvP3QjRODSWY3l508wcN5o_edL-3ZDv7QJdGI20hCIrMNSnEvSm4/s640/IMG_2242.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Opening Day boys</td></tr>
</tbody></table>
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He asked if I could send him the picture, which I did. A
week later he called me to tell me he had forwarded that picture on to a close
friend at the Cubs and the Cubs organization would like to invite us to a game.
How wonderfully considerate and nice, I thought. Those words do not even
describe our ticket pick-up experience let alone our day. </div>
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<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheGLu8Rop6CrpiVzHHoOluMNrI2TnRp3VQwd29JEIc3z0Gkm-ArCpSV90pxgA1CAE20Dxt3MZaRbmgsJyzIvYi-HWIQdpZUzj1LRZRRVlL7WtppISQSf5eEUPb6S73wLWFRMy6t2vXmAs/s1600/IMG_4749.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheGLu8Rop6CrpiVzHHoOluMNrI2TnRp3VQwd29JEIc3z0Gkm-ArCpSV90pxgA1CAE20Dxt3MZaRbmgsJyzIvYi-HWIQdpZUzj1LRZRRVlL7WtppISQSf5eEUPb6S73wLWFRMy6t2vXmAs/s640/IMG_4749.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wrigley Field is one of my favorite places in all of Chicago</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzZ9dEdExMWy3fNA-Sc2ujD7YWpwmYxS_o4BQhKzAQa5dFjr4k-prSMMhyphenhyphen7SJu74zHnvbAEuHo1WmMZFpC3hSy1pRe9nXKGkVc02QS2u90KpcQrFuh25WL7ihhoUhPZPVVC2zRYYUSlco/s1600/IMG_4742.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzZ9dEdExMWy3fNA-Sc2ujD7YWpwmYxS_o4BQhKzAQa5dFjr4k-prSMMhyphenhyphen7SJu74zHnvbAEuHo1WmMZFpC3hSy1pRe9nXKGkVc02QS2u90KpcQrFuh25WL7ihhoUhPZPVVC2zRYYUSlco/s640/IMG_4742.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Take me out to the ballgame</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxT7ozLJsPxwRqXIiMwesnd_5RWlwpcxZJuFhmLy70Y2GyzzIXy80k9Yi5IaTr6pK1-KJ3SF2URYBVLq9QqYvsoKhgU0mnjicn3twFXF2PbZPdvkPr8AufrA43W8MRD51JJWnu4qo6vQ0/s1600/IMG_4744.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxT7ozLJsPxwRqXIiMwesnd_5RWlwpcxZJuFhmLy70Y2GyzzIXy80k9Yi5IaTr6pK1-KJ3SF2URYBVLq9QqYvsoKhgU0mnjicn3twFXF2PbZPdvkPr8AufrA43W8MRD51JJWnu4qo6vQ0/s640/IMG_4744.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Let's get some runs . .. seriously some runs would be nice</td></tr>
</tbody></table>
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</div>
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We picked up our tickets at a special side entrance where we
avoided the main gate and escorted to the concierge to check our stroller. </div>
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<br /></div>
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Next we picked up our tickets. Not to brag but I am pretty
good at understanding tickets, row, aisle, seat<span style="mso-spacerun: yes;"> </span>. . . doesn’t take much to follow the numbers. Yet, these
tickets were different and very difficult to understand. As we were being
directed closer and closer to the field bubbles of excitement started to form.
We finally arrived at Asile 19 and showed the usher our tickets. He looked at
the tickets, smiled at us, and said “oh, follow me.” Down we walked until he
held his hand pointing to the VERY FRONT ROW behind homeplate. As he walked
away, he smiled and said enjoy the game. WHAT?!?!? Greatest Cubs day ever. Even
Nate who plays everything as super cool guy got pretty geeked out by these
seats. </div>
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If that was the end of the story it would be an outstanding
story but it’s not . . .it goes on.</div>
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<div class="MsoNormal">
About 30 minutes before the game Dr. D’s friend, Wilford
Brimley (or the identical twin who works for the Cubs) came over and said “Is
this Connor and JD? How are you boys doing today? I heard your favorite player
is David DeJesus. Do you want to meet him? Come with me.” SERIOUSLY!?!?! Why does
Connor love DeJesus so much? Last year I went to a baseball game with some friends
and they handed out David DeJesus bobbleheads which Connor loves. As a 1½ year
old he would run down the hall “bobbling” his head holding DeJesus. He truly is
his favorite. </div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlaarPgLPopyghqUON5GNY1leuAzmc_TEAsNjduDP6rDmfnd7uyo6Dr7ObUcSTXw45gyHh5MsFSeIMu6BObyJH5Ua2qLEf2QBzpD-1Z-lVnKAbc0tOYMGHH6FhmnSuRBQ15diivndqt1g/s1600/IMG_0836.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlaarPgLPopyghqUON5GNY1leuAzmc_TEAsNjduDP6rDmfnd7uyo6Dr7ObUcSTXw45gyHh5MsFSeIMu6BObyJH5Ua2qLEf2QBzpD-1Z-lVnKAbc0tOYMGHH6FhmnSuRBQ15diivndqt1g/s640/IMG_0836.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">June 28, 2012: Hot summer day just hangin' with David DeJesus bobblehead</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
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<i style="mso-bidi-font-style: normal;"><u>Fun David DeJesus
Facts</u>:</i></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">His birthday is the
exact same day and year as mine. DeJesus knows what it’s like to have this said
to him “this is for both your birthday AND Christmas.” Ugh!</i></div>
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<i style="mso-bidi-font-style: normal;">Nate went to high school
with DeJesus’ wife, Kim</i></div>
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<br /></div>
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As we chatted with Wilfrod Brimley we watched a few of the ceremonial
opening pitches, watched as the ball kids got ready, and the players take the
field for stretches. Next we were escorted on the field for a family picture:</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVzkiOl3Hrgkwcc34HMXMRqSpG_eFClTHg5ObW0qSZ6fhqTYKsGsEEkyKdksp0r6iKd_ZMRn2IzQqw2WaOhvm72Jw-IEp-hoC63vYSGjeg9KosD0ceLIYgD4jRX6xCinspw-b1ahS3Wl0/s1600/IMG_4753.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVzkiOl3Hrgkwcc34HMXMRqSpG_eFClTHg5ObW0qSZ6fhqTYKsGsEEkyKdksp0r6iKd_ZMRn2IzQqw2WaOhvm72Jw-IEp-hoC63vYSGjeg9KosD0ceLIYgD4jRX6xCinspw-b1ahS3Wl0/s640/IMG_4753.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nate had to hold Connor tight as he was very close to running the bases</td></tr>
</tbody></table>
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<div class="MsoNormal">
Standing on the on deck circle waiting for DeJesus looking
up at the stands made my eyes water. A year earlier we were driving slowly down
Fullerton staring at our 6lb 10oz baby. And yet on Friday I stood with a sore
back because my 18½ lb baby was heeeeavy. Smiles and watery eyes.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Ever see a 2-year-old try to comprehend how his bobblehead
is now a real person? It helps me appreciate that wide-eyed innocence during
special moments in life. Our real-life bobblehead was such a sweet guy.
Sometimes the people in DeJesus’ situation can blow off their little fans but
that was not the case with DeJesus at all. He happily had a conversation with
Connor about how bobbleheads’ heads move around. He gave him a game ball. But
coolest of all he reached in his back pocket and handed Connor his batting
gloves. Connor is NEVER short on words and he just stared with a smile and
wonder. Treasured family moment forever. June 7<sup>th</sup> will continue to
be a very special day for the Gawels every year.</div>
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<div class="separator" style="clear: both; text-align: center;">
</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinZ_5gFEe77m9LCJxkEag2n_UAM6XbtBWfIOr2PD8uAvwKlLgeojKvEa-IKGTskKm7a_RQwQxfqFPvJtEGe3Q1yWRmK_ErslDENb-s-M0ngo3weqNepjuDO7-A5erOmwFI50MWI0YlgVk/s1600/IMG_4760.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinZ_5gFEe77m9LCJxkEag2n_UAM6XbtBWfIOr2PD8uAvwKlLgeojKvEa-IKGTskKm7a_RQwQxfqFPvJtEGe3Q1yWRmK_ErslDENb-s-M0ngo3weqNepjuDO7-A5erOmwFI50MWI0YlgVk/s640/IMG_4760.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"David DeJesus said 'Hey Buddy' and gave me his batting gloves" Connor loves telling the story</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1Bs_07Jat3JEGdyWh56VQyH9WUp-CTM6KBlIHK7ORLKgpHk_-nPSNB4gOhAtghW57BPpX410O7oDW5dre2iNKpNkoTOr9pgUrGAkBQK9E7fJfOurSjEf_mt5nm14a8N6LmrWYrAM0PqY/s1600/IMG_4763.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1Bs_07Jat3JEGdyWh56VQyH9WUp-CTM6KBlIHK7ORLKgpHk_-nPSNB4gOhAtghW57BPpX410O7oDW5dre2iNKpNkoTOr9pgUrGAkBQK9E7fJfOurSjEf_mt5nm14a8N6LmrWYrAM0PqY/s640/IMG_4763.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gawel Family photo with our bestie David DeJesus</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0J7fDx7R-NqGSEXtAylD4cjknjH3ehdtMoBff3MbNZtx_7pNWx5RjshTOoxeP9FYRMzc-qIPXtylJeNXvcjPHudo3jR4lrIuQN-FsCECvvqrv5mv_oVvGcp3mU1UUPSLuybz-8I9alOY/s1600/IMG_4767.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0J7fDx7R-NqGSEXtAylD4cjknjH3ehdtMoBff3MbNZtx_7pNWx5RjshTOoxeP9FYRMzc-qIPXtylJeNXvcjPHudo3jR4lrIuQN-FsCECvvqrv5mv_oVvGcp3mU1UUPSLuybz-8I9alOY/s640/IMG_4767.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First ballpark hotdog</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwcafNkxwmSFyXCIH8IZdN6X0GaTn7BQrxW2cXqg12gdN2eNxapUONB4wBhfgaMN6aEjxLK9OMHneG5Nl_My5sENX7m-NvEK2f1AF0x58E3HcC5JXQKSYISnK_FwfnrvnB14xpvPhv_LY/s1600/IMG_4768.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwcafNkxwmSFyXCIH8IZdN6X0GaTn7BQrxW2cXqg12gdN2eNxapUONB4wBhfgaMN6aEjxLK9OMHneG5Nl_My5sENX7m-NvEK2f1AF0x58E3HcC5JXQKSYISnK_FwfnrvnB14xpvPhv_LY/s640/IMG_4768.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">View from our seats</td></tr>
</tbody></table>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u>June 8, 2012</u></i></b></div>
<div class="MsoNormal">
It was me and my two boys alone for the first time. Was I
scared? Yes. Did Connor watch more TV then he is normally allowed? Maybe <span style="font-family: Wingdings; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Cambria; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span> Was it fantastic
having both boys home with me all day? ABSOLUTELY. We started learning just how
hard the nurses work remembering the feeding schedule, the medicine doses, when
to check vitals, changing diapers, enjoying some playtime, and so much more. We
loved holding him without cords and wires. Connor continued to protect JD and
make sure he had his Pokey Puppy with him at all times.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We could not leave the house or go on walks or run to the
store or visit friends but we started our life as a family of four and we were
loving it. Our fabulous friends, the Webers, dropped off Lou Malnotiis pizza
and wine for dinner topping off a great first full day at home.</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfKhdAKcj56MSkI2Cu3tjXvyUsqE3L8lkF2yakWBe2pxM2bkxPu3s4HEBpDgz0fnsvnwFfn_Gcvyig0XuxscofuUuk52UXVgOFFM-71fJ5mjeHLdUezMEjgNxPa7IF87E55xQChbQat8s/s1600/IMG_1306.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfKhdAKcj56MSkI2Cu3tjXvyUsqE3L8lkF2yakWBe2pxM2bkxPu3s4HEBpDgz0fnsvnwFfn_Gcvyig0XuxscofuUuk52UXVgOFFM-71fJ5mjeHLdUezMEjgNxPa7IF87E55xQChbQat8s/s640/IMG_1306.jpg" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Making himself right at home</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">June 8, 2013</i></b></div>
<div class="MsoNormal">
Coming off the high of our Cubs game we rolled right into
the weekend with excitement. Lil’ Sluggers in the morning then Ribfest Chicago
in the afternoon (trying to get all our fests in before moving to the ‘burbs).</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As we watched Connor lead his team in . . . troublemaking
(the 25 year-old coaches have patience of a angels) our favorite Dr. D came
running by and stopped by to check-in on our Cubs outing. The smile that formed
on his face matched our own as we excitedly told him about Connor and JD high
fiving Daivd DeJesus.<span style="mso-spacerun: yes;"> </span>Knowing JD’s
up coming surgery will put him out of commission recovering for at least a
month he was thrilled to help us create special family moments.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We ended up stopping by his house to share a few cheers and
beers with his family on the way to the Ribfest. Warning: the Gawels love a
good backyard party so if you are inviting us just to be polite too bad because
we will actually show up.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Another great day wrapped up with a Game 5 win sending the
Blackhawks to the Stanley Cup Finals.</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcz56v1NxWW1EPtORN5BB795xQ5kmlFy63ziHoPnnWn4AyB8NAdPn3B1Zl_fCRsDYHqgk6AVWGFGGp36eCIsTJcL7s6dBQN_XL0pkg83StYlBo3-0qWQvYmUod3ItETvskjVHoKxKKcrI/s1600/IMG_4779.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcz56v1NxWW1EPtORN5BB795xQ5kmlFy63ziHoPnnWn4AyB8NAdPn3B1Zl_fCRsDYHqgk6AVWGFGGp36eCIsTJcL7s6dBQN_XL0pkg83StYlBo3-0qWQvYmUod3ItETvskjVHoKxKKcrI/s640/IMG_4779.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hitting home runs never gets old</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivCjahpk70HeJJFWe1xKnpu3WnRtEHLR1QPKkHlZX3BIr1Axl_ym8_GKSWJGWx1KJ744jPiqf7AfY2Fo5BupLKTjBg9rRPTlbGGyvD-yvOEkvDKKp_7q8F-4nLqbESnERLtX1r3YmbmOE/s1600/IMG_2525.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivCjahpk70HeJJFWe1xKnpu3WnRtEHLR1QPKkHlZX3BIr1Axl_ym8_GKSWJGWx1KJ744jPiqf7AfY2Fo5BupLKTjBg9rRPTlbGGyvD-yvOEkvDKKp_7q8F-4nLqbESnERLtX1r3YmbmOE/s640/IMG_2525.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Heading to the Ribfest</td></tr>
</tbody></table>
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOyNDDdZ6lZ05dWPa-dV17FdW_a5YP2R1_mAnDbaL0kdAh4fOmt3LHtMrQ9lehLLfqtyVadPKN2tACx8DZv3yWg8THfY9wtLo7OufzIrFXdlRf9l4s56o62dkB3dnzzOnk4yLv8Yd8qUo/s1600/IMG_4790.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOyNDDdZ6lZ05dWPa-dV17FdW_a5YP2R1_mAnDbaL0kdAh4fOmt3LHtMrQ9lehLLfqtyVadPKN2tACx8DZv3yWg8THfY9wtLo7OufzIrFXdlRf9l4s56o62dkB3dnzzOnk4yLv8Yd8qUo/s640/IMG_4790.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">How many ribs should we get?</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u>June 9, 2012</u></i></b></div>
<div class="MsoNormal">
Saturdays in the summer are suppose to be spent outside
enjoying the air and allowing little ones to wear themselves out. However, last
year we could not leave the house as a family as JD was not yet ready for the
city world. Instead we took turns taking Connor to the park, to the store, and
to get ice cream (that was my turn). </div>
<div class="MsoNormal">
If you were driving through the city on this day you would
have seen a line of ambulances making the 3 mile drive from Lincoln Park to
Streeterville transporting kids from the old Children’s Memorial to the new
Lurie’s Children. Throughout the day while we enjoyed home snuggles over 200
families were nervously awaiting their turn in the ambulance.<span style="mso-spacerun: yes;"> </span>I was actively texting my NICU moms and
our nurses while following the progress of the move online. All went well and
our buddy Jackson got the best room with the best views in the house which he
deserved.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
That evening I finally got to take my matching PJs picture
that I dreamed of since the moment I found out we were having another little
boy. Being home as a family of four was becoming comfortable</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikrR9sPnxvT0S1vgV_v0nSaXhVxEETU__UqB-WChXppqLGulaE92devp5ZHmCk4Zcttf-rlNSMe2ZZBKH8rwDC1R3_WScORFauqrViX-IriKPNVn5mFzkXfZQqmMBPyTl_TiifXPLm4EQ/s1600/IMG_1336.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikrR9sPnxvT0S1vgV_v0nSaXhVxEETU__UqB-WChXppqLGulaE92devp5ZHmCk4Zcttf-rlNSMe2ZZBKH8rwDC1R3_WScORFauqrViX-IriKPNVn5mFzkXfZQqmMBPyTl_TiifXPLm4EQ/s640/IMG_1336.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Saturday night family of four</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTR9jQvUWcvQfQnAGxlb5MvxlPp9XHQ2PkDjBHLkYShxQeYNmcL8qZBsrrvVJYICTqWdrsNgF3ntZRYWTympkgdyJusmKW7dM5ala6TE115_OTFe2kDz_cFEUHjc-CvYH0W1frIyxx5so/s1600/IMG_1355.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="518" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTR9jQvUWcvQfQnAGxlb5MvxlPp9XHQ2PkDjBHLkYShxQeYNmcL8qZBsrrvVJYICTqWdrsNgF3ntZRYWTympkgdyJusmKW7dM5ala6TE115_OTFe2kDz_cFEUHjc-CvYH0W1frIyxx5so/s640/IMG_1355.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brothers matching PJammies</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u>June 9 2013</u></i></b></div>
<div class="MsoNormal">
Sunday mornings are for brunch. If I had my way we would go
to church and brunch every Sunday morning<span style="mso-spacerun: yes;">
</span>. . . but pretty much everyone else in Chicago has the same idea leaving
long waiting times with two hungry adults and two rascally kids.</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4xhvvSxsThjSNTVQylWIMArelQLeIQ8nrWB7PgSj2wb4VRMOvhIIjxJlgXvUtY_r7u8UdY4eVZGH2lM5r8SMiN-AnN-Aa5tQ4XyWnCf1bbZS3BVqAOTVbym3KEwUJJRpx96M_Mp65V10/s1600/IMG_2532.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4xhvvSxsThjSNTVQylWIMArelQLeIQ8nrWB7PgSj2wb4VRMOvhIIjxJlgXvUtY_r7u8UdY4eVZGH2lM5r8SMiN-AnN-Aa5tQ4XyWnCf1bbZS3BVqAOTVbym3KEwUJJRpx96M_Mp65V10/s640/IMG_2532.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A year ago this kid was wearing a collar and was unable to be held without lots of support, now he is practically sitting up on his own</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While big family moments with Cubs players are some of our
favorites we will always have a place in our hearts and memory for the everyday
joys - brunch, park, naps, family dinners, movies, walks, laughs and most of
all nightly snuggles. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u>June 10, 2012</u></i></b></div>
<div class="MsoNormal">
With each day JD was home we got a little more comfortable
and felt a little more like our life as a family of four was becoming normal. June
10, 2012 was the day Connor became his little brother’s personal superhero. As
we went about our day Connor would periodically check-in on JD and<span style="mso-spacerun: yes;"> </span>. . . well you know the rest. JD made a
noise, Connor said “JD out,” Nate noticed he was blue, the ambulance arrived
and we were back at the hospital (read all about it here).</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifV-ZkQA4hUs5NMeapak_EnjTDmfBeifwuTa4YlFU-AdtF3SHyrnMzAIeI7ln3F1bos5vwGlaeACpVKMfabURWeXa1TAnmw02DA7988Ul-7knOQPgaVNqJ1JSnf0GvZ6ZcAlU1LyKJsGA/s1600/IMG_0734.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifV-ZkQA4hUs5NMeapak_EnjTDmfBeifwuTa4YlFU-AdtF3SHyrnMzAIeI7ln3F1bos5vwGlaeACpVKMfabURWeXa1TAnmw02DA7988Ul-7knOQPgaVNqJ1JSnf0GvZ6ZcAlU1LyKJsGA/s640/IMG_0734.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">An hour later he turned blue</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thus, our next 1½ months were spent at Lurie’s Hospital . .
. not a bad place to be when your little one needs extra care. We rolled right
back into our old routine but the best part was Connor was now allowed to
visit. While he loved seeing his brother the full size Chicago fire truck was
really the draw. Daily, Connor would ask if he could “go to JD’s hospital.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Over the next few weeks we celebrated Father’s Day, the 4<sup>th</sup>
of July, and summer in our private room at Lurie’s. While I would have loved
being home with both of my boys during that time I am grateful for those extra
few weeks. It was during those weeks I spent more time with my friend Carrie
and her little man Jackson. I cherish those moments with Jackson and Carrie. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It was also during that time I got to know the new hospital much
better. The months following our discharged included LOTS of appointments at
the hospital and by that time I was totally a pro making the appointments much
smoother. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u>June 10, 2013</u></i></b></div>
<div class="MsoNormal">
A typical Monday: play date at the park with friends, trip
to Trader Joe’s, naps, and playing baseball while wearing David DeJesus batting
gloves . . .you know a typical day. </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiV63bzmz1_RqNZ9wsat3HsCaUINbWw8fQPVn_zvPklQ0VJ5FmxFpUGqxk71jOfHxylgnjc-qrxZEEEWqIxnyi7PgRrfViOunkj2cJugolHWR0a6Niyo7nORHQKGdEOklzO8w1EQVVazo/s1600/IMG_4839.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiV63bzmz1_RqNZ9wsat3HsCaUINbWw8fQPVn_zvPklQ0VJ5FmxFpUGqxk71jOfHxylgnjc-qrxZEEEWqIxnyi7PgRrfViOunkj2cJugolHWR0a6Niyo7nORHQKGdEOklzO8w1EQVVazo/s640/IMG_4839.jpg" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">DeJesus' gloves almost fit</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuFWPXb5zBQp0zj_QhcZ0av_7MKW172CDRvLl2ZdXrDokjeO-eQUOo-QMESuRrf9ChgV4Qdu9lEquQMKx9vxhzFv6AWq5cXiQiJATwTope7Suiqyd-FQQUUyFvk2U1-wiyT6IowF80Vyk/s1600/IMG_4849.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuFWPXb5zBQp0zj_QhcZ0av_7MKW172CDRvLl2ZdXrDokjeO-eQUOo-QMESuRrf9ChgV4Qdu9lEquQMKx9vxhzFv6AWq5cXiQiJATwTope7Suiqyd-FQQUUyFvk2U1-wiyT6IowF80Vyk/s640/IMG_4849.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Balls are hit further and bases are run faster with DeJesus' gloves on</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On June 10, 2012 if you would have asked me “what do you
think you will be doing this time next year?” I would have told you “I have no
idea what the future looks like.” I always knew we would find our normal but I
was unsure of what our normal would be. It turns out our normal is the exact
same as I always imagined<span style="mso-spacerun: yes;"> </span>. . .
with a few more appointments. And in reality is there really even a “normal.”
Every family is unique in their daily routines and adventures.<span style="mso-spacerun: yes;"> </span>The Gawels are no different. When we
received JD’s diagnosis I did not know how the words “special needs” would fit
into our daily lives. It turns out it doesn’t . . . because the words special
needs never come up. JD needs a bit more attention but then again what second
child doesn’t (the second children I know always were a bit more rascally even
as adults). </div>
<div class="MsoNormal">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLNPW_QKVed8bwnQHdPXVGZEKW8cl9QJK472WxvYgCncy_bPhwifAmFftjRXjzylNL9Fdchj71sydaN7PH81yGZF3_Kh29vtl11vX2uyldMh2S35G_GlM54l_aGX5Oi2KAh4qET1Af0O0/s1600/IMG_2541.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLNPW_QKVed8bwnQHdPXVGZEKW8cl9QJK472WxvYgCncy_bPhwifAmFftjRXjzylNL9Fdchj71sydaN7PH81yGZF3_Kh29vtl11vX2uyldMh2S35G_GlM54l_aGX5Oi2KAh4qET1Af0O0/s640/IMG_2541.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chunky, happy boy with no wires, no collars, no helmets, no shoes just fun on the floor<br />
</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOCMizdsTE3HQckIYuknQUxZV_Cshd7oL_GX7Ke4fjJxftkurTN29oREo30yGQG3swvW0txG_moztdh1AFCZGSvuqBjDHO4N_eYIrDScPdHBUBmIKn7lfRSXa4s81Gu_nkJhrgmj2Hg_c/s1600/IMG_4867.JPG" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOCMizdsTE3HQckIYuknQUxZV_Cshd7oL_GX7Ke4fjJxftkurTN29oREo30yGQG3swvW0txG_moztdh1AFCZGSvuqBjDHO4N_eYIrDScPdHBUBmIKn7lfRSXa4s81Gu_nkJhrgmj2Hg_c/s640/IMG_4867.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A year ago he had a collar and was not cleared for tummy time. Today we are working on rolling over all by himself.<br />
</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div align="center" class="MsoNormal" style="text-align: center;">
***********</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u>Gawel Adventure List</u></i></b></div>
<div class="MsoNormal">
With JD’s surgery coming up we working towards checking off
items on our Gawel Adventure List in the next few weeks. Knowing it may take a
few weeks before JD will be up and running at full speed we want to make the
best of the summer prior to surgery. Therefore, we have fast tracked some of
the simple things we want to do this summer. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Things like:</div>
<div class="MsoNormal">
*Watch the boys play in the sand at the beach</div>
<div class="MsoNormal">
*Take a family ride on the ferris wheel at Navy Pier</div>
<div class="MsoNormal">
*Attend a Kane County Cougars game with friends</div>
<div class="MsoNormal">
*Swim in grandma/grandpa pool for the first time. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Simple yet memory making. I love making childhood memories. We
kicked it off big by becoming besties with David DeJesus so we are hoping to
keep the excitement going.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This week, one more thing has been added to the Gawel
Adventure List: </div>
<div class="MsoNormal">
*Gawel Family Photo with the Stanley Cup</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When I was pregnant with Connor the Blackhawks won the
Stanley Cup. I was unable to attend the parade because a crowd of 2 million
people does not mix well with a 7 ½ month pregnant belly. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When I was on maternity leave the Cup made it’s way through
my office allowing my coworkers to take pictures with the greatest sports
trophy in the world (next to the Olympic Gold Medal – obviously). Thus I missed
out on the parade and the Cup in 2010.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Once again the Blackhawks have won the Stanley Cup and once
again I missed the parade. I have watched as Facebook has blown up with
pictures of the Cup all over the city of Chicago. Once again I continue to miss
it. But not this time! In order to avoid missing it I have added “Gawel Family
Photo with the Stanley Cup” to our Adventure List. Not sure how I plan to make
that happen but considering we gave Connor the Kaner . . .</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaQvF5W-4yrRq98P7vSbi8FQLp5YMY7HO8NpMc8nUx3fxfAQWd-MbkvtDg42ulMhksw5qmRxek6I0kr6aiZYinMkn-q7wmUNqk0APpXkesl7jqLUof5eEXk8ojUNv3LB-MgbJZ-pP96tg/s410/Connot+%252B+Kaner+2.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="334" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaQvF5W-4yrRq98P7vSbi8FQLp5YMY7HO8NpMc8nUx3fxfAQWd-MbkvtDg42ulMhksw5qmRxek6I0kr6aiZYinMkn-q7wmUNqk0APpXkesl7jqLUof5eEXk8ojUNv3LB-MgbJZ-pP96tg/s640/Connot+%252B+Kaner+2.png" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Connor the Blackhawk </td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
… we will find a way. Part of me hopes they make their
rounds through Lurie’s while JD is here surgery but the likelihood of that
happening are pretty slim. Until then I plan on searching for the Cup in the
hopes we can have a wall of super amazing photos from pictures with David
DeJesus to JD sitting in the Cup (okay that is asking a lot but if you gotta
dream big).</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We will keep you posted on the Cup Watch 2013 but until then
I will keep spiking Connor’s hair in the Kaner in the hopes we happen to be
walking past a bar with the Cup.</div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com0tag:blogger.com,1999:blog-1180946282070400491.post-75809402690436208782013-05-30T19:31:00.000-07:002013-05-30T19:33:11.141-07:00Profile of a Handsome Boy – Part 4 <style>
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<br />
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">Genetics</span></u></i></b></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Side note: Science geeks are asked to refrain from
judging my descriptions of human genetics . . . you know who you are.</span></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">The last and final piece to
understanding JD is the most important. Without understanding JD’s genetic
make-up it is hard to appreciate how truly remarkable James Douglas is in this
world.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Let’s kick it old school and
take it back to Science class. Humans have two sets of 23 chromosomes (labeled
1-22 plus X or Y for the gender chromosome), one set from mom and one set from
dad, for a total of 46 chromosomes. On each chromosome are hundreds of genes
that determine how our bodies look and function. Each tiny gene is just one
piece of the human puzzle. Just like a jigsaw puzzle if one piece is missing
the picture is still a picture but slightly incomplete. </span><br />
<br />
<span style="font-family: Arial;">Taking a closer look at the
4<sup>th</sup> chromosome we dive further into our science lesson (ohhhhhh . .
. Sheldon Cooper would be so excited right now). A chromosome is made up of 2
sections, also known as the arm: the short arm is called p (p is for petite) and
the long arm is called q (it is the next letter in the alphabet – honestly that
is the reason it is named q). </span><span style="font-family: Arial;"><br /></span></div>
<div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivxvuVkb5CDK7p7vpF0AJ1a4a6U2yzDGl3vdWEtAywKHLz5-la2w9uZ7dMltJBsETH-DaHEHVqq6NazMk9AgIgL-78jv-3IbrLSiS63zX1ffnUqDVoj2xg1YIq5qR7g3RL_cLy3eszQUI/s1600/sc000161cd.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="492" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivxvuVkb5CDK7p7vpF0AJ1a4a6U2yzDGl3vdWEtAywKHLz5-la2w9uZ7dMltJBsETH-DaHEHVqq6NazMk9AgIgL-78jv-3IbrLSiS63zX1ffnUqDVoj2xg1YIq5qR7g3RL_cLy3eszQUI/s640/sc000161cd.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">JD's actual Chromosome Map - pretty sweet huh!</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
<span style="font-family: Arial;"><span id="goog_479537256"></span><span id="goog_479537257"></span><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Arial;">If you take a very, very
VERY close look at the picture above you will see one of the 4<sup>th</sup>
chromosomes is slightly shorter than the other. Can ya see it? It’s cool, it
took me a few times too.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">JD’s deletion is on the
short arm (p) of the 4<sup>th</sup> chromosome. His classification is 4p-14
this means his genes are deleted from the tip of the 4<sup>th</sup> chromosome
all the way to the labeled gene 14. The genes on a chromosome are classified
with different numbers. There is still so much “they” do not know about
chromosomes and the individual genes but “they” are finding out more and more
everyday. For example, “they” have isolated a gene on the 4<sup>th</sup>
chromosome which if deleted has been associated with seizures or other abnormal
electrical activity in the brain. . .hence why JD and most of his little
buddies have seizure activity. Bored yet?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFgkhdUUVzYZrG5-ehW3eb2K_of6HePfS_AAXJRh2ll3B3NLGagUUL6wZo7qyjv250MH-uy-Fkp7quZylhblBSNBPbtXDfkFTKBydqn54OYAEKPvj5R5XLoaajsq34V4gBXM6jmQCaG2g/s1600/sc00014e24.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFgkhdUUVzYZrG5-ehW3eb2K_of6HePfS_AAXJRh2ll3B3NLGagUUL6wZo7qyjv250MH-uy-Fkp7quZylhblBSNBPbtXDfkFTKBydqn54OYAEKPvj5R5XLoaajsq34V4gBXM6jmQCaG2g/s640/sc00014e24.jpg" width="380" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">JD's 4th Chromosomes: On the left JD's deletion, on the right JD's full 4th Chromosomes</td></tr>
</tbody></table>
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Each child has a unique
deletion. Given this detail it becomes very difficult to classify kids with WHS
as mild or severe or to predict what it will mean for future development. I
believe the best doctors will guide parents to look for support but avoid
giving an estimated outcome based on the fact each kid is unique. After getting
to know many of the other families it is clear no two kids are exactly alike.
The severity of developmental delays depends: on the genetic material deleted,
if there is a translocation or additional chromosome elsewhere, and, in my
opinion possible the most important, the parental love and medical care
available to the child. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Compared to others in the
group JD has a big and rare deletion. Larger than our geneticist had seen . .
.and yet, JD is dominating. We recently had a doctor’s appointment which
started with Dr. D saying “Did you see the weight? Are you kidding? Check out
his weight! He’s doing great” and ending the appointment by saying “I just love
these appointments. They make my day.” On paper JD’s deletion tells us he will
have some challenges. In reality JD tells us “bring it.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Is he sitting up on his own?
No. Can he hold his head up for a bit? You bet. Does he talk? He sure wants to.
Does he smile? Kinda, at times. Does he move around? All the time, he loves to
kick and stretch. Is he healthy? Heck yeah. Will he sit up on his own by the
end of the year? Yes he will and that will be my first favorite milestone.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">A serious question we never
get asked but people talk around it: what is JD’s prognosis? When we first
learned of JD’s syndrome the research told us not to expect much past the age
of 2. Old statistics shows approximately 35% of children with WHS do not make
it to their 2<sup>nd</sup> birthday.<span style="mso-spacerun: yes;">
</span>However, that number has changed and decreased with new data. While over
the past year we have said good-bye to some of the younger buddies in the group
that number continues to decrease. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">As of now no doctor has ever
given us a prognosis nor have we ever asked for one. Just as the doctors in the
NICU treated JD no different we plan to do the same. All of our decisions will
be made to ensure he is healthy and comfortable but most of all loved
throughout his life. Whether it is long or short JD’s life will be full of love
and memoires. Hope that answers the question no one has wanted to ask </span><span style="font-family: Wingdings; mso-ascii-font-family: Arial; mso-char-type: symbol; mso-hansi-font-family: Arial; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span><span style="font-family: Arial;"></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">Food</span></u></i></b></div>
<div class="MsoNormal">
<span style="font-family: Arial;">After 13 months of nothing
but breast milk for JD and exclusive pumping for mom (yikes), JD has finally
started to transition to blenderized food. In fact he is now eating 100%
blenderized food . . . and loving it. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">We met with a nutritionist
at Lurie’s to discuss JD’s dietary and caloric needs. JD was eating 7 times a
day every 3 hours with a break overnight. During the transition we moved to 6
times a day every 4 hours with NO break overnight (booo for 2am feedings back
on the schedule). But now we have JD’s final feeding schedule, 5 times a day
every 4 hours with a break overnight (no more 2am) YAY! This allows him to have
more time where he is not hooked up to the feeding pump. The new schedule
enables JD to have additional playtime with more activity and less downtime.
Plus, selfishly, we no longer have to wake up at 2am and/or 5am to start a
feed. The dark bags under my eyes should be clearing up any day now. . . </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">JD’s new meals include
fruit, veggies, protein, grains, milk, and OJ all blended together for a
healthy meal. There is a food-based formula we can purchase in a pinch but we
figured we would put our Vitamix to work. The kid eats better than us at every
meal. Makes me feel guilty when I don’t make a homemade meal.</span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgB14sOl3xhKdEXNghvmEELf900jL5LyGThe4OVD31Utw_Rk9Cw0ydZj2YGpPdDy07xhyphenhyphenfeopOmFJpL1XcYR-NVXiXX1i4SMdCgAdJ1yHrlrbW7TQazz6IOnmplpmJ1_4O-OeYQTWbV-aA/s1600/IMG_4523.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgB14sOl3xhKdEXNghvmEELf900jL5LyGThe4OVD31Utw_Rk9Cw0ydZj2YGpPdDy07xhyphenhyphenfeopOmFJpL1XcYR-NVXiXX1i4SMdCgAdJ1yHrlrbW7TQazz6IOnmplpmJ1_4O-OeYQTWbV-aA/s640/IMG_4523.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">JD's first taste of ice cream - obviously it's Bobtail Ice Cream (Bobtail is the local ice cream shop across the street from our condo which has 45 minutes lines out the door in the summer)</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-a0Xr7Sske0JL6X8VMvBZzntXGtOZJxzZwijOCdeJDhRqKPNQwWRldMfJtc80Px9Yavyk6UUTZ-0skbI45oUfmhiNXVs0irh7ubpqZebe-nOXKkGpyjJ8eqZfAQBJbZrvZSV1SibaEv0/s1600/IMG_4524.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-a0Xr7Sske0JL6X8VMvBZzntXGtOZJxzZwijOCdeJDhRqKPNQwWRldMfJtc80Px9Yavyk6UUTZ-0skbI45oUfmhiNXVs0irh7ubpqZebe-nOXKkGpyjJ8eqZfAQBJbZrvZSV1SibaEv0/s640/IMG_4524.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Give me more please!!!</td></tr>
</tbody></table>
</div>
<div class="MsoNormal">
<u><i><b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Weight</span></b></i></u></div>
<div class="MsoNormal">
<span style="font-family: Arial;">It’s working! JD is chunky
and handsome. As of yesterday, he is 18lbs 5oz which puts him off the charts
among his WHS peers. 3<sup>rd</sup> percentile on the overall growth chart and
off the charts on the WHS growth chart – we will take it!!! With his large ASD
his heart has to work even harder to pump oxygenated blood throughout the whole
body burning more calories as it works. Now you see why his weight gain is so
incredible.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Reasons we focus on weight
is twofold:</span></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l18 level1 lfo27; text-indent: -.25in;">
<span style="font-family: Arial; mso-bidi-font-family: Arial; mso-fareast-font-family: Arial;"><span style="mso-list: Ignore;">1)<span style="font: 7.0pt "Times New Roman";">
</span></span></span><span style="font-family: Arial;">These little
munchkins grow slower and growth is very important for development. As a parent
you don’t know how important growth is in the first two years until you have a
little one who is not growing as quickly. The more he grows, the stronger he
gets and the more he can do. Pretty simple biology yet so hard to accomplish.</span></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l18 level1 lfo27; text-indent: -.25in;">
<span style="font-family: Arial; mso-bidi-font-family: Arial; mso-fareast-font-family: Arial;"><span style="mso-list: Ignore;">2)<span style="font: 7.0pt "Times New Roman";">
</span></span></span><span style="font-family: Arial;">Anytime you have
a surgery you want to be in fighting shape. Strong, healthy, and in peak
condition. With JD’s upcoming surgery it is important JD be as strong and big
as he can be. The bigger and stronger he is going into the surgery the quicker
the recovery . . .is the goal.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">We love chunky thighs and a
big belly.</span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRRGQP1jxWaM-Nn4KgydbUQVh9fO305-aI6AAU6rUAWmXBBS0Ia6cmhvbAtd1CaLsegUaITYCbu5EAyWYSc_6ynf9u_Q5GXScOTXkCK3rmdlGRYX1p3qHnlLaq_nx1QQGmyw_eId4Q6pU/s1600/IMG_2423.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRRGQP1jxWaM-Nn4KgydbUQVh9fO305-aI6AAU6rUAWmXBBS0Ia6cmhvbAtd1CaLsegUaITYCbu5EAyWYSc_6ynf9u_Q5GXScOTXkCK3rmdlGRYX1p3qHnlLaq_nx1QQGmyw_eId4Q6pU/s640/IMG_2423.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chubbs with rubber band wrists</td></tr>
</tbody></table>
</div>
<div class="MsoNormal">
<u><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Therapies</span></i></b></u></div>
<div class="MsoNormal">
<span style="font-family: Arial;">I have not talked much about
JD’s therapies and his amazing therapists but I will save that for another post
on it’s own. Yet, I will tell you that JD is doing outstanding things like
supported sitting while playing with toys, strong tummy time with good head
holding, and rolling from side to side. He cannot quite get all the way over on
his own but with some assistance he is looking good. More to come on his
therapies but know he is rocking his weekly appointments.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<u><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Heart Update</span></i></b></u></div>
<div class="MsoNormal">
<span style="font-family: Arial;">We have met and discussed
with Dr. D our pediatrician, we have met and discussed with the cardiologist,
we have been to the cardiac cath lab (and discussed results), we have met with
the cardiac surgeon (great guy who has an impressive resume of ASD surgeries),
and now we have a surgery date. On Friday, July 26, 2013 JD will undergo open-heart
surgery to close his very large ASD. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">More details to come as we
get closer but we ask you to save some of those “please let the Blackhawks win
the Stanley Cup” prayers for JD in July. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">Neck Update</span></u></i></b></div>
<div class="MsoNormal">
<span style="font-family: Arial;">After meeting with Dr.
Neurosurgeon yesterday we are officially weaning JD off the collar. His neck
looks great and for the time he will not need fusion surgery. About 3 months
after his heart surgery he will get an MRI of his whole spine to check on a few
things but for now the doctor is impressed (obviously) and has cleared JD for
heart surgery.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">The Whole Picture</span></u></i></b></div>
<div class="MsoNormal">
<span style="font-family: Arial;">When people say “medically
complex” they could easily put a picture of JD next to the definition. Flip a
few more pages and look up “fighter” and you will see an even bigger picture of
JD. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Nate and I recently looked
back at the list of signs and symptoms that <i style="mso-bidi-font-style: normal;">MIGHT</i>
be associated with WHS. The list has 30 distinct signs and symptoms. Of those
30, JD has 25. Most kids have less and we have yet to find someone with more. Nonetheless,
this list makes JD who he is today and we are incredibly pleased. When I first looked
at this list in January 2012 I was incredibly fearful of JD having even 3 of
these symptoms let alone 25. Now, I look at the list and think these signs and
symptoms are not so scary after all.<span style="mso-spacerun: yes;">
</span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Fear comes from the unknown.
Being pregnant with a child who has a very rare genetic syndrome is terrifying.
When you become a parent you have an idea of how you want to raise your kids.
You have a vision of these polite little mini-me clones that adore you and do
their best to behave. Then you arrive home from the hospital with your first
little angel (monster) and you realize you have underestimated this little
creature.<span style="mso-spacerun: yes;"> </span>Your future vision is
adjusted. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">It’s the same idea with a
rare diagnosis. You have a vision full of fear of the unknown but then you meet
your little bundle and once again your future vision is adjusted. Only this
time you realize rare does not have to mean fear. Yes, there are many unknowns
but it’s the things we do know that make us smile. At this point all we need to
know is JD has added more sunshine to the family. Days are not filled with fear
but rather smiles, laughs, and hugs.<span style="mso-spacerun: yes;">
</span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">For all of his complexities
James Douglas is a very strong and healthy boy. Doctors are continuously amazed
when they see how great he looks and how well his little body functions.
Through love, prayer, and positivity JD has continued to grow and surpass all
old, antiquated expectations. We have no doubt that will continue well into the
future. </span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_mMeWnTJkRCKN2KC8pds2anFVdi4ZK1igctOLWLt1eNTQo0ZvGSM0JEeopoOBYWiRUdKm0jehSOV4r9pcaAjgmuuKbaOroc4q5kr0TwH2HZ49QK1QnF0G82U1ys1IZvPvJ3yIIASoTQE/s1600/IMG_4307.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_mMeWnTJkRCKN2KC8pds2anFVdi4ZK1igctOLWLt1eNTQo0ZvGSM0JEeopoOBYWiRUdKm0jehSOV4r9pcaAjgmuuKbaOroc4q5kr0TwH2HZ49QK1QnF0G82U1ys1IZvPvJ3yIIASoTQE/s640/IMG_4307.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy First Birthday James Douglas!!!</td></tr>
</tbody></table>
</div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com3tag:blogger.com,1999:blog-1180946282070400491.post-85251543911195525352013-05-07T20:14:00.001-07:002013-05-07T20:14:56.113-07:00Profile of a Handsome Boy – Part 3
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<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">And we’re back with our profile series. The
anticipation is just as thrilling as waiting for the next Twilight. Sorry for the
delay but we have been very busy with some fun updates coming up very soon. Stay
tuned . . . </span></i></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;"><span style="text-decoration: none;"><br /></span></span></u></i></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">The Cord (Spine/Neck)</span></u></i></b></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Life is a story and the
events need to happen in a particular sequence to lead you down your true path
. . .yada, yada, yada. You have heard me say this many times and I will
continue saying it because it keeps proving to be right.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Quick reminder: At our Level II 20-week ultrasound
the doctor saw a small hole at the base of the spine that was classified as
Spina bifida. We prenatally met with the neurosurgeon specializing in Spina bifida
where we discussed what that would mean for delivery and immediately after. It
was during this meeting she told us JD would be monitored at Prentice until he
was stable then transported to the NICU at Children’s Memorial . . . 3 miles
north. Check out the <a href="http://www.growingupgawel.blogspot.com/2012/02/first-date-and-tulips.html" target="_blank">post</a> where we go into detail.</span></i></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;"> </span></i><span style="font-family: Arial;"> </span></div>
<div class="MsoNormal">
<span style="font-family: Arial;">A few hours post delivery JD
was transported to Children’s Memorial Hospital to spend two days preparing for
Spina bifida surgery. Yet, when he arrived at Children’s the doctors started to
question if he in fact actually had Spina bifidia (check out this <a href="http://www.growingupgawel.blogspot.com/2012/04/surgery-update.html" target="_blank">post</a> for more
information).</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">It was through the multiple
MRIs we received the good news JD did not have a hole in his spine rather a
sacral dimple (just another sign and symptom of Wolf-Hirschhorn). This
information was shared as I arrived at Children’s for the first time. I was
tired, scared, lost in thought and had yet to see JD so it took awhile for the
magnitude of this news to sink in. When I was pregnant reading up on Spina
Bifida and WHS I would say to Nate “I wish he had Spina bifida OR WHS . . .
but<span style="mso-spacerun: yes;"> </span>WHS and Spina bifida together
is going to be tough. And yet, on Day 3 of life we were once again rerouted
onto a brighter path. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">I woke up on Wednesday,
April 4, 2012 with tears in my eyes scared that my son would be having spine
surgery only to go to bed that night with tears in my eyes knowing he was
resting comfortably without surgery. My belief in miracles grew a bit stronger
that day.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">However, the MRI did revealed
JD has a misalignment in his cervical spine as well as a tethered cord. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">C-Spine</span></i></b><span style="font-family: Arial;"> – From day 3 of life JD has had a soft collar to
help keep his neck align as his bones formed. While it might not look like much
the soft collar alone has shown astonishing improvement in a short period of
time. </span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUzgps86Jk8b5WuZFB7s7MTWhghz20AgNezry4vSx5ZbR78tBbx6UbNcOXqBqG5B1VZwivjgYAi2jyNgYhQJQOprCcAhJFNKCXfKXVgsu1hX5Vt_s8bPVwWkpRO4XgmieN6cxAz3swmfM/s1600/IMG_1379.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="374" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUzgps86Jk8b5WuZFB7s7MTWhghz20AgNezry4vSx5ZbR78tBbx6UbNcOXqBqG5B1VZwivjgYAi2jyNgYhQJQOprCcAhJFNKCXfKXVgsu1hX5Vt_s8bPVwWkpRO4XgmieN6cxAz3swmfM/s640/IMG_1379.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">X-Ray on the left (6 months), MRI in the middle (3 days old), CAT scan on the right (3 months) CAT scan - different views yet the same result outstanding improvement</td></tr>
</tbody></table>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">On the first day I was discharged from the hospital I was able to hold JD in
kangaroo skin to skin . . . and that was the last time that was allowed for the
next 4 months</span><span style="font-family: Arial;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
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<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9rfNjt9F5B2-C5TG9fvMn70RqsVO4U0yjnzfnHetNxO76cM5TyS5UihzyvuuRMXVlXqQmtAShTCWtZtztg1OZ-DrEoSAsjZ4yUVBtFPN4xAE7vvxvS4OxHj9-v0tMc7kI4MAXRs-fz68/s1600/IMG_9980_2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9rfNjt9F5B2-C5TG9fvMn70RqsVO4U0yjnzfnHetNxO76cM5TyS5UihzyvuuRMXVlXqQmtAShTCWtZtztg1OZ-DrEoSAsjZ4yUVBtFPN4xAE7vvxvS4OxHj9-v0tMc7kI4MAXRs-fz68/s640/IMG_9980_2.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First and last skin to skin time while in the hospital - a very happy and tired mommy</td></tr>
</tbody></table>
<br />
<br />
<br />
<div class="MsoNormal">
<span style="font-family: Arial;">In the beginning we started
off having to hold JD on a pillow in a very specific alignment. No tummy-time,
no skin to skin, no tight snuggles. The nurses would come over ever now and
then adjusting his position making sure his collar was correct and his neck was
aligned. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;"> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj52f314uFbGhBH52uYum8hKd3J5fG3gcd1cS7XXMYARCouOWb2bZfUN_NYKzkQehinAFigCmlZlZ4r-jepYgOSNTKrTxXVFDtdjtIu5lSIPS_7KAB2AH5GlUHrRp_Go8MVTrE74J7Hrwk/s1600/IMG_0102.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj52f314uFbGhBH52uYum8hKd3J5fG3gcd1cS7XXMYARCouOWb2bZfUN_NYKzkQehinAFigCmlZlZ4r-jepYgOSNTKrTxXVFDtdjtIu5lSIPS_7KAB2AH5GlUHrRp_Go8MVTrE74J7Hrwk/s640/IMG_0102.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Daddy with the pillow hold</td></tr>
</tbody></table>
</span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">After Day 3 it took two months before we truly had the chance to see his neck - the collar needed to be worn 24/7. The first time we took it off I fell in
LOVE with his bulldog cheeks and they continue to win me over everyday.</span></div>
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<span style="font-family: Arial;"> </span></div>
<div style="text-align: left;">
</div>
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<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAO0vMLH3J4ff23arVboLDwANWTfBeD0Va2fZgp42BVYpO89OxQHyrzsfYV9CPSD5qCiTEmajUQDmK5XC5yT4rgJl7o7BWqM1o9nIphQOgMXz8eCY1h94w9iOsHepeH6ld-WbLamTbO3s/s1600/IMG_0014.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAO0vMLH3J4ff23arVboLDwANWTfBeD0Va2fZgp42BVYpO89OxQHyrzsfYV9CPSD5qCiTEmajUQDmK5XC5yT4rgJl7o7BWqM1o9nIphQOgMXz8eCY1h94w9iOsHepeH6ld-WbLamTbO3s/s640/IMG_0014.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First day with the collar (the red on his face is from the tape)</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoyXB_WOv3ELhYKSFR4xrsJd6kOndq3FQZpbcvHJv7LAN4ZIYFSKL_ftZivnXCJQe6GmNxxJlXjaCZ_AJcEUlsdojoluo_nnn0fxDDfohbF-Cr4IORa8RXfUlS440ev4xNaarktNiNTKE/s1600/IMG_1052.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoyXB_WOv3ELhYKSFR4xrsJd6kOndq3FQZpbcvHJv7LAN4ZIYFSKL_ftZivnXCJQe6GmNxxJlXjaCZ_AJcEUlsdojoluo_nnn0fxDDfohbF-Cr4IORa8RXfUlS440ev4xNaarktNiNTKE/s640/IMG_1052.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First picture without the collar - Hello Bulldog Cheeks</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX036hQ8ZKNVAHxdkYhbLyiKS314F24EKzkPU_-DAgJ6LvYF-QWBUTeHz8Zmwyb-M9TINJ6OepRCLPw0yNaSEYVTyu2l9qFgHp4O-DpydsEk7VCP73y7brFzvVcTNYo9irJs3QQucsn1g/s1600/IMG_2072.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX036hQ8ZKNVAHxdkYhbLyiKS314F24EKzkPU_-DAgJ6LvYF-QWBUTeHz8Zmwyb-M9TINJ6OepRCLPw0yNaSEYVTyu2l9qFgHp4O-DpydsEk7VCP73y7brFzvVcTNYo9irJs3QQucsn1g/s640/IMG_2072.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Same collar 12 months later</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;"> Going from not being able to
hold him close to my heart to now being able to throw him over my shoulder as
he holds his own head up is my favorite part of watching him grow. His neck
strength is inspiring and we have full confidence by Christmas he will be
sitting up with little support. Given where he started this is an astounding achievement. </span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFYpZQqoFG9ASTv1kOi0JqhPAKigER_2jIutTEx3ZhskyZIs9RuH8aaMyurFK3yKTZbzEfmJNZ7Z3nF00I9im2WZyg0SiCfvj6JAGFgeaEA_J19O7TiJM-AimDv10kweOVfDU9Q48vpBI/s1600/IMG_4107.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFYpZQqoFG9ASTv1kOi0JqhPAKigER_2jIutTEx3ZhskyZIs9RuH8aaMyurFK3yKTZbzEfmJNZ7Z3nF00I9im2WZyg0SiCfvj6JAGFgeaEA_J19O7TiJM-AimDv10kweOVfDU9Q48vpBI/s640/IMG_4107.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One year later lookin' tough with bulldog cheeks and no collar</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Neurosurgery continues to
follow us and the likelihood of neck fusion surgery (fusing together the C1 and
C2 vertebrae) continues to diminish. Fusion surgery still remains in the
bullpen as a possibility but we are hoping with each therapy session and all of
JD’s hard work we don’t have to go to the bullpen (especially if our bullpen is
anything like the Cubs).</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Tethered Cord</span></i></b><span style="font-family: Arial;"> – This was first mentioned in the <a href="http://www.growingupgawel.blogspot.com/2012/09/a-delayed-happy-five-months.html" target="_blank">A Delayed Happy Five Months </a>post. A person’s
spinal cord is supposed to end at L1/L2 vertebrae but JD’s goes all the way to
L4. Technically your spinal cord should free float in your spine but JD’s is
held down, or tethered if you will, which can cause restrictions. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Potentially a tethered cord
can cause complications with movement of the extremities as well as other parts
of the body controlled by the cord. Although, anyone who has seen JD in person
knows he has nooooooo problems moving around. Cord surgery has been thrown into
the mix of possible surgeries during surgery season for JD. Given his heart is
the most important piece we will focus on cardiac surgery then more to the
other specialist. Dr. Neurosurgery has once again been bumped from the top of
the pyramid.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">This brings me back to my
original point . . .if that one doctor (the one who walked in the room and said
“I guess I am the barer of bad news) had not mentioned the hole from the
ultrasound JD would have stayed at Prentice in the NICU with many of his
additional complications going unnoticed for the first few weeks. Nothing against
the NICU at Northwestern but their job is to grow small babies, an oil change
if you will. Yet, Children’s . . .well Children’s does the overall detailed
diagnostic check scrubbing through every inch of the car not just changing the
oil. Given JD’s complications he would have ended up at Children’s Memorial at
some point. Yet, God gave us the clues to ensure we made it to the right place
at the right time. While one of the hardest moments was to watch JD being
wheeled away, I truly believe JD being transported to Children’s Memorial saved
James Douglas’ life.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">Tootsies(Clubfoot)</span></u></i></b></div>
<div class="MsoNormal">
<span style="font-family: Arial;">JD’s foot is correcting very
nicely. He has no issues with his right foot, which is the clubfoot. But that
is not the end of the story. The left foot, feeling left out (pun intended),
has caused quite a few problems for JD. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Every classy woman knows
when breaking in shoes she will suffer for looking fabulous. It’s natural and
part of looking stunning. As JD was breaking in his shoes he too suffered for
beauty getting a few blisters around his foot. Most healed yet a very stubborn
one on the back of his heal continued to get worse. It finally created a hard
callus and that was that. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Months later, JD became very
moody while putting on the boots and while waking up in the morning. One night
Nate noticed his heel was red and tender but I, being the great mother that I
am, brushed it off. In my very flimsy defense, Nate hates the boots so I
assumed he was looking for any reason to take them off. Mother knows best and I
won that round. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">The following morning I took
off his boots and saw his heel was swollen, pink, white, and black all around
his previous blister area. Please refrain from calling DCFS.<span style="mso-spacerun: yes;"> </span>Off to the emergency room we went to
ensure it was not infected. Infections cause fevers, fevers cause seizures and
at this time he had not been diagnosed with seizures so we needed to stay on
top of this one. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">After 5 hours in the ER, 6
doctors, 4 nurses, and 1 orthotics guy they told me to go see our boot doctor.
Perfect. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Dr. Boots recast his right
foot for a few weeks to help the left foot heal. Once we put the boots back on
he seemed fine again . . . until 3 days later when the moodiness started again.
This time I was mother of the year and let him go without boots for two weeks (shhhhh,
don’t tell) until we went back to the doctor. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Good news, his clubfoot is
still very flexible so we did not lose ground. We now have a custom-made foot
brace for his right foot at night so his left foot can stay free and clear.
These don’t hold as well so they normally don’t like to use them but JD’s foot
is correcting so nicely that Dr. Boots is okay with this for a few months. We
actually think JD likes it more because he can move his feet independently.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">For now, JD’s boots will sit
on the sideline until we are ready for his next pair, which will be
custom-made. Considering I could own two pairs of fabulous shoes with red soles,
if ya know what I mean, for the price of these boots I might have to grab the red
paint to spice up JD’s footwear. </span></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Look for wrap-up in Part 4 by the end of the weekend.
Until then, enjoy the spring. . . especially our buddies in Minnesota who have
enjoyed too much snow this year.</span></i></div>
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<tr><td class="tr-caption" style="text-align: center;">Just two classy boys</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The goofball and the scholar</td></tr>
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Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com0tag:blogger.com,1999:blog-1180946282070400491.post-68110921603793757532013-04-02T08:45:00.005-07:002013-04-02T08:45:55.264-07:00Happy, Happy Birthday James Douglas: One Year Later
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<span style="font-family: Arial;">One year ago today, Nate and
I sat in the lobby of Northwestern Memorial Hospital as I calmly called my
parents asking them to bring my half-packed hospital bag. Preparing for a
surprise arrival a few weeks prior I had packed a bag with a list of additional
items I would need to add once the time arrived. And the time had arrived.</span></div>
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<span style="font-family: Arial;">As my mom frantically ran
around our condo grabbing the additional items on the list Nate and I just sat
patiently waiting. Remember, we were in no hurry – need a memory boost check
out the birth story <a href="http://growingupgawel.blogspot.com/2012/04/james-douglas-gawel-is-here.html" target="_blank"><b style="mso-bidi-font-weight: normal;">here</b></a>.</span></div>
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<span style="font-family: Arial;">On April 2, 2012 we were
scared, excited, nervous <span style="mso-spacerun: yes;"> </span>. . . but
once JD was born . . . we were happy. </span></div>
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<tr><td class="tr-caption" style="text-align: center;">A few hours old strong, stable, and ready to charm some NICU nurses</td></tr>
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<span style="font-family: Arial;">The memories remain crisp in
my mind a year later. I close my eyes and remember a calm feeling hugging me
throughout the night. As my mom peacefully rested on the pull out bed next me I
was wide-awake. It was the first time since January 3, 2012 I was able to
breathe a comforting breath. Finally, I was not worried or concerned. My smile
lasted all night long but sleep did not come easy for me. A mix of fluctuating
hormones (comes with giving birth) and the love I felt when I saw my perfect little
James Douglas kept me up all night long. Sleep escaped me but my thoughts did
not. In the middle of my insomnia I began writing. Some of it I shared in the
blog but some of it I kept for just JD and me. After a year of growth and
strength there is one piece I wanted to share. </span></div>
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<span style="font-family: Arial;">*****************</span></div>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">4/3/12 – 2:50am</span></i></b></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Finally, I can see it. Our future.<span style="mso-spacerun: yes;"> </span>From the moment I realized Nate was
“The One” I had a clear, HD vision of our future. I saw everything from our
wedding to our marriage to our kids to our family trips to high school and
college for our children to their weddings to our grandchildren . . . basically
I could see our everything. Then, January 3<sup>rd, </sup>2012 arrived and my
HD vision turned blurry, snowy, and old school TV antenna grey. I could not see
anything. I did not know what would happen to our family. Would we ever go on
family trips? Would our children ever be close as siblings? Would our friends
pull away from us leaving us alone? Or worst of all would we even have two
children by the end of the year?<span style="mso-spacerun: yes;">
</span>It was upsetting and scary. I pushed through the final months of my
pregnancy straining to see through the bleak, hazy darkness.</span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">However, today I sit here unable to sleep so excited
my little boy has arrived. I am finally starting to get a clearer picture.<span style="mso-spacerun: yes;"> </span>It is more 1970s Technicolor than HD at
this point but I am finally getting an idea of what our new future will be. I
see Connor as the big brother who wants nothing more than to make his little
brother smile. I see Connor proudly smiling at his brother in the stands as he
dominates whichever sport he chooses. And I see Connor coming home from college
with a college sweatshirt especially for JD. </span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Fast forward a year and I see JD winning his first
medal at the Special Olympics (I don’t even know if they give out medals but in
my future they do) with his biggest and loudest fan, Connor, cheering him on in
the stands. I see more family trips than I imagined watching the kids swim in
the ocean and meeting Mickey and horseback riding on a Dude Ranch. I see the
same happy family as I did in my previous future with a few tweaks. </span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">It is not fully HD as of yet (JD was born less then
24 hours ago I need some time) but the vision is becoming clear and I know
there is a strong future for the Gawels, family of four.</span></i></div>
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<span style="font-family: Arial;">*****************</span></div>
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<tr><td class="tr-caption" style="text-align: center;">One day old rockin' the premie pacifier - seriously, that is the smallest one they had</td></tr>
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<span style="font-family: Arial;">A year later my vision is
much stronger. Honestly, some days are more in focus than others but that is to
be expected with life in general. </span></div>
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<span style="font-family: Arial;">A year later we continue to
focus on the positive and leave the negative behind. </span></div>
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<span style="font-family: Arial;">A year later there are more
laughs and less tears. </span></div>
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<span style="font-family: Arial;">A year later we swell with
pride as we talk about JD</span></div>
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<span style="font-family: Arial;">A year later I no longer
worry about what people think about JD but rather I find ways to tell more
people about him.</span></div>
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<span style="font-family: Arial;">A year later we watch as
Connor has taken on the strong, protective big brother role with a sibling love
much greater than I imagined</span></div>
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<span style="font-family: Arial;">A year later we would not
change one thing about our family.</span></div>
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<span style="font-family: Arial;">A year later the song “For
Good” from <i style="mso-bidi-font-style: normal;">Wicked</i> floats through my
head each morning when I look at JD. My favorite lyrics:</span></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">I've heard it said<br />
That people come into our lives for a reason<br />
Bringing something we must learn<br />
And we are led<br />
To those who help us most to grow<br />
If we let them<br />
And we help them in return<br />
Well, I don't know if I believe that's true<br />
But I know I'm who I am today<br />
Because I know you...</span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">I have been changed for good</span></i></div>
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<span style="font-family: Arial;"><span id="goog_1899814521"></span>Happiest of Happy 1<sup>st</sup>
Birthdays to our love James Douglas Gawel!<span id="goog_1899814522"></span></span></div>
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<span style="font-family: Arial;"> A year in review with JD</span></div>
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Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com1tag:blogger.com,1999:blog-1180946282070400491.post-39299318638420526552013-03-17T14:37:00.000-07:002013-03-17T14:37:40.830-07:00Profile of a Handsome Boy – Part 2
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Recap</span></i></b><span style="font-family: Arial;"> – Initially in the NICU the cardiac team explained
JD potentially had an ASD, VSD, Aorta Coarctation, and Pulmonary Stenosis (need
to jog your memory check out <a href="http://www.growingupgawel.blogspot.com/p/medical-jargon.html" target="_blank"><i style="mso-bidi-font-style: normal;">Medical Jargon</i></a> and <a href="http://www.growingupgawel.blogspot.com/2012/04/jd-medical-updates-4412.html" target="_blank">JDMedical Updates</a>). And yet, JD pulled away with only one<span style="mso-spacerun: yes;"> </span>- ASD, the least complex of the list. Surgery
would be planned around 2 years old if the hole had not closed on its own.
Waiting 2 years allows the ASD to close without intervention. After 2
years of age it is less likely the hole will close without surgery.</span></div>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Refresher</span></i></b><b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;"> </span></b><span style="font-family: Arial;">– Atrial Septal Defect (ASD) is a congenital heart
defect in which the wall that separates the upper heart chambers (atria) does
not close completely. Many times an ASD is considered minor as it can close on
it’s own or people can live a long, healthy life with a small ASD. As the Cardiologist
grandfather of one of our NICU buddies said “if you are going to have a heart
thing an ASD is the one you want.”</span></div>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">History</span></i></b><span style="font-family: Arial;"> – During our cardiology appointment in September
2012 the ECHO showed JD’s ASD was not growing yet not getting any smaller. As
he was growing it was growing proportionally with him. At that time they
noticed higher pressures on the right side of his heart. The original surgery
timeframe moved up from 2 years old to around his first birthday with a few
checks in-between.</span></div>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Present</span></i></b><span style="font-family: Arial;"> – In January, we had a follow-up ECHO with the
cardiologist. Once again, the hole is growing proportionally with him. During
the ECHO the doctor pointed out JD <i style="mso-bidi-font-style: normal;">almost
</i>has what is called a common atrium – meaning he <i style="mso-bidi-font-style: normal;">almost</i> has no wall separating the two sides of the heart. </span></div>
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<span style="font-family: Arial;">What does that mean? With a
hole (large or small) there is a risk of the blood from the right side of the
heart flowing directly to the left side of the heart without getting oxygen
from the lungs. The diagram below may help for those who are more of the visual
type. I am currently hording this information in my head and I need to relieve
my brain. Science geeks this one if for you. . . </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh93zsHeSSJADSiTZST-asqIq_u_bztFYTPtvjVDvUp5G9fggIoYtIo8MCT7G5HnflPD3yYAr7Zj9of2xa-DoRtRstzwbn1o6aNa5gyIbHAiQsGAA9m4m9NIn77h7uHP-VZuFH1YJLWRkU/s1600/Picture+2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh93zsHeSSJADSiTZST-asqIq_u_bztFYTPtvjVDvUp5G9fggIoYtIo8MCT7G5HnflPD3yYAr7Zj9of2xa-DoRtRstzwbn1o6aNa5gyIbHAiQsGAA9m4m9NIn77h7uHP-VZuFH1YJLWRkU/s400/Picture+2.png" width="365" /></a></div>
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<span style="font-family: Arial;">The blood in need of oxygen
comes into the heart through the right atrium down to the right ventricle and
out to the lungs to “fuel up” with oxygen. Once the blood is all pumped up it
goes back to the heart through the left atrium down to the left ventricle then
out to the body. In JD’s case some of the blood in need of oxygen comes into
the right atrium and immediately flows to the left atrium down the left
ventricle then out to the body without fueling up with oxygen. As you can
imagine it’s not ideal having non-oxygenated blood flowing back into the body. </span></div>
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<span style="font-family: Arial;">The larger the hole is, the
more the blood can escape from the right side to the left side without fueling
up in the lungs. I will say it again, JD’s hole is extremely large. </span></div>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Cardiac Catherazation</span></i></b><span style="font-family: Arial;"> – Coming out of the cath lab we would be faced with
3 different paths.</span></div>
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<span style="font-family: Arial; mso-bidi-font-family: Arial; mso-fareast-font-family: Arial;"><span style="mso-list: Ignore;">1-<span style="font: 7.0pt "Times New Roman";">
</span></span></span><span style="font-family: Arial;">The pressures in
the heart and lungs would be fine or slightly elevated allowing the surgeons to
close the hole completely at a later date.</span></div>
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<span style="font-family: Arial; mso-bidi-font-family: Arial; mso-fareast-font-family: Arial;"><span style="mso-list: Ignore;">2-<span style="font: 7.0pt "Times New Roman";">
</span></span></span><span style="font-family: Arial;">The pressures in
the heart and lungs would be elevated to a point where the blood would still
need an outlet. Therefore, they would close the ASD but leave a controlled hole
to relieve some of the pressure.</span></div>
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<span style="font-family: Arial; mso-bidi-font-family: Arial; mso-fareast-font-family: Arial;"><span style="mso-list: Ignore;">3-<span style="font: 7.0pt "Times New Roman";">
</span></span></span><span style="font-family: Arial;">The pressures in
the heart and lungs would be extremely elevated resulting in potentially
serious complications if the ASD was closed.</span></div>
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<span style="font-family: Arial;">Prior to the cath, Dr.
Cardiology believed it would likely be scenario #2 allowing the surgeon to
safely close the hole while leaving a small outlet for the pressure to escape.</span></div>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Bonus News</span></i></b><span style="font-family: Arial;">: Similar to the Ying & Yang of the cleft and his
breathing, JD has once again created an advantageous balance. JD’s large atrium
hole in the heart has created a passageway to help alleviate additional
pressure buildup. Without that outlet the pressure could have potentially
elevated to dangerous levels. Little munchkins are absolutely amazing.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Breaking News:</span></i></b><span style="font-family: Arial;"> After the cardiac cath lab we received updated news
from the doctors. I must admit I was hoping the doctors would come back with straightforward
slam-dunk information. Either all systems go for the heart surgery or let’s put
the breaks on the surgery. However, as in life, the answers were as clear as
the Chicago River. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">The cardiac cath lab showed
the pressures in his heart and lungs were good, the Pulmonary Value was fine
and the overall function was strong. Actually, the picture looked better than
the doctors originally imagined. Given this information, surgery to close his
ASD would be very straightforward and very doable. There are still many risks
with open-heart surgery (which is what this would be) but not doing the surgery
leaves JD open to many more risks throughout his life. I wish that was the end,
the last period. More pros in the surgery column with a long list of cons in
the no surgery column.<span style="mso-spacerun: yes;"> </span>BUT . . .
there is always a but.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">While the surgery itself
would be straightforward (baring any surprises) the “<i style="mso-bidi-font-style: normal;">aftermath,</i>” as the doctor called it, would be a bit more
challenging. During surgery he would have to be on a ventilator to give his
lungs assistance breathing. Given JD’s medical complexities weaning off the
vent can sometimes take a few days. The longer on the vent the lazier the lungs
can get (just like me when I skip the gym for a few days . . .okay months)
making it harder to breathe on their own. This can then lead to a host of other
issues which is too exhausting to think about. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Now our list of pros and
cons for surgery vs. no surgery is starting to even out making the decision
more difficult. Not that any decision to have your child undergo surgery is
easy but when the pros stack up on one list it makes the decision a tad easier.
</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Over the next few weeks we
will meet with the doctors to discuss in further detail our options and what it
means for JD. Our goal from day one is to ensure JD has the longest, happiest,
most comfortable life we can give him.<span style="mso-spacerun: yes;">
</span>From the beginning Nate and I have vowed to go into each decision with
no regrets. Some may (and have) question our choices but until a parent is
faced with the toughest questions ever asked of them please support any path
God leads us down. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Keep the prayers, love,
smiles, and support coming for JD. Our little superhero continues to astound
the world.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Happy St. Patrick’s Day – my
favorite American-made holiday.</span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-7F62x_nqPXcgkKY96fAcM5BMMNL2JOEVtrlgYxfY51syIRItNO7nw_wC4hMpaGRLamjxUDmdc1vegsyDv7C5SN9S_IqM16zrT84RqgYZSWogPHmbGo5hmTL8DVwudKNFs5Csd_4hQWc/s1600/IMG_3867.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-7F62x_nqPXcgkKY96fAcM5BMMNL2JOEVtrlgYxfY51syIRItNO7nw_wC4hMpaGRLamjxUDmdc1vegsyDv7C5SN9S_IqM16zrT84RqgYZSWogPHmbGo5hmTL8DVwudKNFs5Csd_4hQWc/s400/IMG_3867.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Day started with his first ever bowl of Lucky Charms and green milk - celebrationist at work</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGfmoPoVodHRzGtuM8rPWUku-q2jLOnBNbBOoQ9s6Hk9Umi1hK93C9SU1SllY7EXM9jnsgAP4Yj3WIB5K12U1F7l0Vid1D7hIsxluPojYMfNwfiEeGhIW_YYUMOGVkQk9KSqNOgU8EyBw/s1600/IMG_3884.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGfmoPoVodHRzGtuM8rPWUku-q2jLOnBNbBOoQ9s6Hk9Umi1hK93C9SU1SllY7EXM9jnsgAP4Yj3WIB5K12U1F7l0Vid1D7hIsxluPojYMfNwfiEeGhIW_YYUMOGVkQk9KSqNOgU8EyBw/s400/IMG_3884.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We then had brunch with our besties for Veronica's 3rd birthday, our yearly tradition</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ_0_aKKhx2w3fnsjYXNHXEb-Za_3G0LH_krKakYW2oIzQV55ZIyAYlAaGCU1v1FryCNkNunOTEbrPoAKrijyArHgIVf2WwgqllcUyOOyBOqMP7K-cB949ZVuSDZrYzRphpiPAIyjvHNY/s1600/IMG_3912.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ_0_aKKhx2w3fnsjYXNHXEb-Za_3G0LH_krKakYW2oIzQV55ZIyAYlAaGCU1v1FryCNkNunOTEbrPoAKrijyArHgIVf2WwgqllcUyOOyBOqMP7K-cB949ZVuSDZrYzRphpiPAIyjvHNY/s400/IMG_3912.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Always have to make our way to an Irish pub on St. Patrick's Day</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeMT_eBwxgVa1uMcVRxCLEw7gth_sEDeRS6C6WIiN9yFG1_I03w9y76iJ733ClKcuYF-jB4WUCVFq9S7cXS5an06Dtres2JyNKkp01mA8tHNQveA-DcLSlsW9Cb2FuJNXyVZJGg2i1ANQ/s1600/IMG_3917.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeMT_eBwxgVa1uMcVRxCLEw7gth_sEDeRS6C6WIiN9yFG1_I03w9y76iJ733ClKcuYF-jB4WUCVFq9S7cXS5an06Dtres2JyNKkp01mA8tHNQveA-DcLSlsW9Cb2FuJNXyVZJGg2i1ANQ/s400/IMG_3917.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Great Grandpa Nolan's Irish cap</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxM1UjXgtcgX1B1U6QTUwb-r2z05fsyX322iUC-SukuMOciSMMeydY7HGfCSxkxTQ_JfuE4Mbr3eNK0QPH3_MVaasa55fiHY96A-MlqJ2lGxJ_eYPEPhOyracCADTqeT0fkX2-8TOF0II/s1600/IMG_3936.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxM1UjXgtcgX1B1U6QTUwb-r2z05fsyX322iUC-SukuMOciSMMeydY7HGfCSxkxTQ_JfuE4Mbr3eNK0QPH3_MVaasa55fiHY96A-MlqJ2lGxJ_eYPEPhOyracCADTqeT0fkX2-8TOF0II/s400/IMG_3936.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My two Irish lads</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiev_oU8tS0FxP-iPfx5R_1LRzkXqo7eZDQEoZIH3QL2-gz0iViQR4S7Edm0yT0l8UWDy2X0g2PTgNbFGbYmDKM7-GFKP9DKtgYBDGpjGLRsQMSuANdh4qmyn5GbxMe5c8BhDwOMr3a84A/s1600/IMG_3973.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiev_oU8tS0FxP-iPfx5R_1LRzkXqo7eZDQEoZIH3QL2-gz0iViQR4S7Edm0yT0l8UWDy2X0g2PTgNbFGbYmDKM7-GFKP9DKtgYBDGpjGLRsQMSuANdh4qmyn5GbxMe5c8BhDwOMr3a84A/s400/IMG_3973.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tradition states everyone gets a turn with Great Grandpa Nolan's cap</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG7gWeMyiq5UskSi-qbZwGm9Q8vryv0WxM0HgxKUa85xMhK5hAnfhrtqO_aVmam1IxOtnH1JlEybJGWoFq11or_D8BB59BTmK-FyDE8UdJCZB0nCyK3yWYT64jEx-pgfCPGRW74sx8AW0/s1600/IMG_3982.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG7gWeMyiq5UskSi-qbZwGm9Q8vryv0WxM0HgxKUa85xMhK5hAnfhrtqO_aVmam1IxOtnH1JlEybJGWoFq11or_D8BB59BTmK-FyDE8UdJCZB0nCyK3yWYT64jEx-pgfCPGRW74sx8AW0/s400/IMG_3982.jpg" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm classy but I'm tough</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Stay tuned for Part 3 coming
soon . . .</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com0tag:blogger.com,1999:blog-1180946282070400491.post-2524281534843938342013-03-13T14:31:00.001-07:002013-03-13T14:31:34.065-07:00Profile of a Handsome Boy – Part 1
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<br />
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Quick Note: This will be the first post of a 4 part
series profiling JD.</span></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">When you hear the number 13 what
is your first thought? Unlucky, right? Even if you don’t believe in luck you
still think about 13 as this strange number everyone should avoid.
Triskaidekaphobia is the fear of the number 13 – this is medically documented
fear. Most tall buildings throughout the U.S. skip right past the number 13
taking you from 12 to 14. If fact, JD’s NICU was on the 14<sup>th</sup> floor
at Lurie’s Children’s Hospital yet there was no number 13 on the elevator so
technically it was the 13<sup>th</sup> floor. We even had friends who
considered waiting a year to have a baby because they did not want their
child’s birthday to have the year 2013. Crazy huh?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Well, I don’t buy. Big
whoop. 13 is just another number. I find it be an ugly number (1 and 3 together
– ugh….ly). I much prefer even numbers. With all that I said, I do not find 13
to be scary or unlucky . . . at least until this year.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">We are officially 11 weeks
into 2013 and we have spent at <i style="mso-bidi-font-style: normal;">least one
day</i> (if not more) each week working through some medical occurrence
regarding JD. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">The year began with confirmation
the hole in is heart is, as Connor would say, big and big and BIG (more on
that). Followed by a bumpy ambulance drive down Lake Shore Drive for our first
hospital stay of the year (unfortunately, not our last) due to RSV. With
seizures, an intense blister leading to an ER visit, random colds, EEGs, heart tests,
therapies, and follow-up doctor’s appointments I am beginning to believe all
the hype around that ridiculous number. People are trying to get rid of the
penny maybe we should get rid of the number 13.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">As I have spent more time
discussing JD and his medical complexities with new and old doctors I realized
. . . this is confusing stuff. With that in mind I have decided to
create a profile of this handsome little man of ours. We will start at the head
and work our way down to the toes. I will do my best to keep it top line . .
.but lets be honest these will be long. Sit back with a glass (actually it will
take a bottle) of wine, put on a fresh pot of coffee, and some yoga pants as
you read the profile from the noggin to the tootsies of this handsome little
boy.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: Arial;">*********** </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">The Noggin (Head)</span></u></i></b></div>
<div class="MsoNormal">
<span style="font-family: Arial;">From the front, JD’s head is
perfectly round and adorable. However, the back of his head, while still
adorable is not perfectly round. After many months lying on his back in the
NICU plus not being cleared for tummy time until he was almost 4 months old and
the lack of full neck support his head has become flat on the left side. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">In December, JD had a
Starscan, a machine which takes a 3D image of his head, to create and mold a
custom helmet. The helmet has space in the back to keep JD off his head while
he is lying down allowing it to grow. When kids are on their heads for too
long it can effect how their heads mature by restricting growth. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Good news:</span></b><span style="font-family: Arial;">
His head is only mildly flat. In order to qualify for a helmet JD needed to
fall within a range of “numbers” (calculated from the Starscan); he barely fell
within that range. The process usually takes an average of 4 months of 23
hours/day helmet wearing but JD tends to grow a little bit slower so he may be
rockin’ the head protection for a bit longer. Although, his numbers tell us we
have less work to do. In the coming weeks we will be adding some bling to the
helmet so stay tuned for the designer version. </span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDEHScmqNCYHA6R38N9CJ-7imF-e2pAKYhwiiZr2-W4HNYLtUbtViXLLTWVzJODF2Ej-u0CdWCDzW8gt9OMsLU5sl105Jh2KAmbr7GlQ-rRiLNvsb3KnrYp6Jolq_jYmMoTVlNO2gHOck/s1600/IMG_1945.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDEHScmqNCYHA6R38N9CJ-7imF-e2pAKYhwiiZr2-W4HNYLtUbtViXLLTWVzJODF2Ej-u0CdWCDzW8gt9OMsLU5sl105Jh2KAmbr7GlQ-rRiLNvsb3KnrYp6Jolq_jYmMoTVlNO2gHOck/s400/IMG_1945.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal">
<span style="font-family: Arial;"> </span></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">The Noodle (Brain)</span></u></i></b></div>
<div class="MsoNormal">
<span style="font-family: Arial;">JD’s seizure activity was
explained in great detail in the <a href="http://growingupgawel.blogspot.com/2013/02/a-heart-shaped-eeg.html" target="_blank">previous post</a>. Two weeks ago, our 6 hour EEG went well as the
doctors were able to extract the data they needed to gather some answers. During the EEG it
was my job to push a button anytime I saw seizure or questionable activity.
During review of the data some of the events were in fact seizures while others
were not. Judging from the doctor’s reaction we have nothing to worry about at
this time. Keeping the seizure activity in check is key for upcoming surgeries.
As of now, the doctors “see no brain reason not to move forward with surgery.”
She actually said, “Neurology can be lower on your list of concerns.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Good News:</span></b><span style="font-family: Arial;">
Dr. Neurology continues to be impressed with JD’s health, his growth and his
reflexes. Stay the course is the prescription from the doctors. He will
continue to receive the same dose of his seizure meds (very low dose of a
“light” seizure medication – there are some meds which are very intense with
powerful side effects, lucky that is not necessary for JD at this time). </span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaO7E5wzuv0WX84WiSgRk6Bx1c2XteTJHc7tderxfSLJFGPNqf8NtIoIQLoElyJbV9mdDWXcjhgyOF5eAYFo5kVKQ8lZ_yX3ZgnUY82caANBayx5fOC0aw_EEMZl22KjvDBz5s-DsN08c/s1600/IMG_3728.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaO7E5wzuv0WX84WiSgRk6Bx1c2XteTJHc7tderxfSLJFGPNqf8NtIoIQLoElyJbV9mdDWXcjhgyOF5eAYFo5kVKQ8lZ_yX3ZgnUY82caANBayx5fOC0aw_EEMZl22KjvDBz5s-DsN08c/s400/IMG_3728.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snuggles at our 6 hour EEG</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<br />
<br />
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">The Windows to the Soul (Eyes)</span></u></i></b></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Let’s be honest, there is
nothing cuter than a little kid with glasses. <span style="mso-spacerun: yes;"> </span>And I have the hipster glasses along with a fedora all picked out for JD<span style="mso-spacerun: yes;"> </span>. . . if he needs them. Wolf-Hirschhorn
puts JD at a higher risk for glaucoma and vision problems. At this point we are
only being <i style="mso-bidi-font-style: normal;">followed</i> by ophthalmology
to remain ahead of any future problems. Every 2 – 4 months we have an
appointment with the corky Dr. Ophthalmology to check out JD’s eyes and test
his eye pressure (glaucoma test). </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Good News<i style="mso-bidi-font-style: normal;">:</i></span></b><span style="font-family: Arial;"> Thus far things are positive and his eyes are not a
concern. His pressures are within normal range and his vision seems to be okay
for now. With his therapies he is tracking well with his eyes and enjoying
watching his brother fly to infinity and beyond – over and over and over again.
Once a day for 30 minutes we patch his left eye to help strengthen his slightly
droopy right eyelid. A droopy eyelid <i style="mso-bidi-font-style: normal;">can</i>
effect vision in the future but as of now there are no issues with his right
eye. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Currently, we are just
waiting and watching so I guess I will hold off on the baby Ray Bans. </span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFmdIKybzib3_eT-dUuaD_foYlskFw8TU0E92BYBZhnReB81qFwtmGO8mCjJ38mK7MK3frG29LWv5f3N1w2fk8UFNp_KkP5sfkAGyT2t1QBAnsb_j8z2T04B7iQm7A_cPFr7xX9z9-AKE/s1600/IMG_2072.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFmdIKybzib3_eT-dUuaD_foYlskFw8TU0E92BYBZhnReB81qFwtmGO8mCjJ38mK7MK3frG29LWv5f3N1w2fk8UFNp_KkP5sfkAGyT2t1QBAnsb_j8z2T04B7iQm7A_cPFr7xX9z9-AKE/s400/IMG_2072.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Look deep into my eyes</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">The Sound Canal (Ears)</span></u></i></b></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Babies are administered a test
to screen hearing shortly after birth. If a child fails the newborn hearing
screen they will be given a second more in-depth hearing test called an ABR. JD
failed the first test twice during his NICU stay. Now . . . I have never received a
failing grade in my life; however, I do not blame JD seeing as he had 4½ less
weeks to study due to being born early.<span style="mso-spacerun: yes;">
</span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">After the failed hearing
screens the powers that be tried the next level of testing, an ABR – twice -
while in the NICU. Nope, no good. He needed to remain asleep for the duration
of the test but alas he was partying. Therefore, we waited until we were
outpatient. The results were updated in the <a href="http://growingupgawel.blogspot.com/2012/10/happy-6-months.html" target="_blank">October</a> post. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Bottom line</span></b><span style="font-family: Arial;">:
JD has some hearing loss meaning he <i style="mso-bidi-font-style: normal;">can</i>
hear but at lower tones. It’s obvious he knows my voice and Nate’s voice and
Connor’s voice as he will turn to watch us when we speak. The previous next
steps <i style="mso-bidi-font-style: normal;">were</i> to place tubes in his
ears, test with another ABR, and reassess. However, due to the new seizure
activity as well as his heart complexities (will discuss more in the heart
section) the tubes are on the backburner for now. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">JD is relieved given
Connor’s passion for loud singing while playing his guitar or drums.</span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4Vx8wsnNysKC2GJwuQoip7vWl_tpyOx650hTAYJUIXtlreWKlB1VuvIERhl9gWFfsnxaBZUqShPBp6MutI23F7ERjWwIZFq5LXwAr_bpUsfPjtB_M8DzoYB4MiJqrJl7q34plUVt-QOc/s1600/IMG_1944.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4Vx8wsnNysKC2GJwuQoip7vWl_tpyOx650hTAYJUIXtlreWKlB1VuvIERhl9gWFfsnxaBZUqShPBp6MutI23F7ERjWwIZFq5LXwAr_bpUsfPjtB_M8DzoYB4MiJqrJl7q34plUVt-QOc/s400/IMG_1944.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">What'd you say? I cannot hear you over my big brother</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">The Cleft Palate (Mouth)</span></u></i></b></div>
<div class="MsoNormal">
<span style="font-family: Arial;">From the outside JD’s mouth is
small and perfect but from the inside it’s all one big open area. As mentioned
in the <a href="http://growingupgawel.blogspot.com/p/medical-jargon.html" target="_blank"><i style="mso-bidi-font-style: normal;">Medical Jargon</i></a> section a cleft palate occurs when the roof of
the mouth is not completely closed. On occasion both the lip and the palate can
be cleft or just the lip or just the palate. In JD’s case it is only the palate
but not the lip.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">An individual with a cleft
palate can learn to use a specialized bottle prior to surgery. Unfortunately
for our little man due to his recessed chin, high risk for aspiration, and
early-on neck restrictions we were unable to push the bottle as aggressively as
we would have liked. We tried and had a few bright moments of success but with
his many other medical obstacles we felt it would be counter-productive to his
progress. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Normally they look to fix a
cleft palate around a year of age. JD was on track to have the palate fixed
shortly after his first birthday; however, with the addition of his seizures,
the upcoming open heart surgery (more on that in the heart section) and the
fact he breathes through his cleft into his nose the cleft repair has been
pushed down on the list of priorities. For us, this is not a concern as he gets
100% of his nutrition from his G-Tube and he is growing at a good rate.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Bonus News:</span></i></b><span style="font-family: Arial;"> For all of JD’s medical complexities he was put
together perfectly. Having a small, recessed chin pulls the tongue to the back
of the mouth restricting the airway. Many children with JD’s chin would have already
had jaw distraction surgery due to major breathing issues . . . but not JD. His
cleft palate created a new airway for JD allowing him to breathe with ease in
spite of his recessed chin. Balance is what this kid is – Ying & Yang</span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvFcPeB1tWkJJt-sVCZYh-HPZtd08DLPIQyhFVYb9hcptU5tPaFVZ2Z1cNxO-bYr5KW7m-Kaq_ku3k47T5FQrunavF7PkgbmrfIRD2zAvkgVPX8y8XsPrFTxE-7UsTRH-HdwycCZN7DtM/s1600/IMG_2068.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvFcPeB1tWkJJt-sVCZYh-HPZtd08DLPIQyhFVYb9hcptU5tPaFVZ2Z1cNxO-bYr5KW7m-Kaq_ku3k47T5FQrunavF7PkgbmrfIRD2zAvkgVPX8y8XsPrFTxE-7UsTRH-HdwycCZN7DtM/s400/IMG_2068.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is the biggest smile you will get out of me while I am in a duck towel</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">The Chinny Chin Chin (Micrognathia)</span></u></i></b></div>
<div class="MsoNormal">
<span style="font-family: Arial;">As we sat waiting to see the
doctor at our 20-week ultrasound, Nate and I stared at the profile picture
quietly pondering the exaggerated overbite. It was the first sign something was
amiss. Just a few moments later Dr. OBGYN would tell us about the other
anomalies in the ultrasound thus starting our journey.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Confession:</span></i></b><span style="font-family: Arial;"> In the beginning, I was nervous about JD’s future
appearance. I was concerned a recessed chin would enhance the difference in
JD’s appearance. That was before he was born. Once I saw him I feel in love
with that chin. When we fix the cleft palate we will have to fix the chin as
well. Fixing the cleft with close what we believe to be a strong airway for JD
so we will need to pull his chin forward to open the airway in the back of this
mouth. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Additional Confession:</span></i></b><span style="font-family: Arial;"> I am very sad about pulling his chin forward. I love
it. It shows off his cheeks with no distractions. Once again, our prenatal
fears for JD disappeared once he joined the world. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">The recessed chin is also a
concern for breathing when he goes under anesthesia. Leading up to his cardiac
cath they were very concerned about his breathing while being sedated and the
team was all set to use a breathing tube (a tube in and of itself can be a problem). I
know I sound like an annoying broken record but JD proved everyone wrong. He
was breathing so well they did not intubate him. This kid is a miracle. </span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6B84h0kB5VJFc_44mCvmwA_pr6Dh2IQ7IDBTE8daUayJmmz777HHKv_RQex8OAixzFaJ3VO9yctRpg21nsoNwOR5QZmgZWyiDlQj01kZzBU0F_kUX8uNNfHf4al17X4vHFXJWNDLEczI/s1600/IMG_2107.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6B84h0kB5VJFc_44mCvmwA_pr6Dh2IQ7IDBTE8daUayJmmz777HHKv_RQex8OAixzFaJ3VO9yctRpg21nsoNwOR5QZmgZWyiDlQj01kZzBU0F_kUX8uNNfHf4al17X4vHFXJWNDLEczI/s400/IMG_2107.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Big cheeks make up for a small chin</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">The Tilt (Neck)</span></u></i></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Recap</span></i></b><span style="font-family: Arial;"> -- JD was born with his C1 and C2 vertebrae out of
line (his cervical spine was kinked). From day 3 of life he has worn a soft
collar to help keep his bones and muscles straight as they grow. Amazingly the
makeshift soft collar allowed his neck to strengthen and straighten over the
past 11 months. <span style="mso-spacerun: yes;"> </span>At our last x-ray
the doctor was so pleased he now only wears the collar at night or in the car.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Good News:</span></i></b><span style="font-family: Arial;"> Discussion of neck fusion surgery has been pushed to
the bullpen. We work on strengthening his neck everyday as he pushes to hold
his head up all on his own. </span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ-SsMPmyMTYQ3Dxux31PUuJmHf2NGgoY4tjmWdatdEuHg5aZERMy6RNQM6XY2VGW67oh0MWK9AYiP9wS1n1yVMGnwF0d30-LzdK6BEgHePWABG02lqspthPOZy45LDKJMvBOgjq6JMXw/s1600/IMG_3775.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ-SsMPmyMTYQ3Dxux31PUuJmHf2NGgoY4tjmWdatdEuHg5aZERMy6RNQM6XY2VGW67oh0MWK9AYiP9wS1n1yVMGnwF0d30-LzdK6BEgHePWABG02lqspthPOZy45LDKJMvBOgjq6JMXw/s400/IMG_3775.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just taking a break from working on my neck</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: Arial;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Arial;"><br /></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: Arial;">********* </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">**That was a long one. Hope
it only took one bottle.</span></div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com1tag:blogger.com,1999:blog-1180946282070400491.post-53825648570247449592013-02-21T20:41:00.002-08:002013-02-21T20:41:35.119-08:00A Heart Shaped EEG
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<div class="MsoNormal">
<span style="font-family: Arial;">On Valentine’s Day you may
have noticed every mom posted some adorable picture of their child in/with some
Pinterest craft, shirt, pose, or food. I too wanted to post something stunning
to make the Facebook world say “oh she saw that on Pinterest – it looked much
cuter on Pinterest.” But alas my Valentine’s dreams of taking cute Pinterest
worthy pictures of my boys decked out in red as homemade glitter hearts fall
from the sky came to a screeching halt. Instead I spent 5 hours at Lurie
Children’s Hospital walking from the EEG center to the doctor’s office to the
labs to the pharmacy all while carrying a baby carrier and two bags with no
stroller (that was my fault). Let me backup a few months . . .</span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGkBJYXgLDoJkDM4fOY1a9WtXcauQdSidofF8p_3EaelL5xxn-vVcwNfuoJwunAv8edcXUQ3Om8fKGSfs7Y0Zi0-eqwzk0FfeVhly38NHLAeuDxc0WZZWnSurpNhEPxAlKppfLbe9Qgio/s1600/DSC_1428_e.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGkBJYXgLDoJkDM4fOY1a9WtXcauQdSidofF8p_3EaelL5xxn-vVcwNfuoJwunAv8edcXUQ3Om8fKGSfs7Y0Zi0-eqwzk0FfeVhly38NHLAeuDxc0WZZWnSurpNhEPxAlKppfLbe9Qgio/s400/DSC_1428_e.jpg" style="cursor: move;" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Imagine large glitter hearts falling from the sky and some cute photoshopped saying about love and Valentine's Day</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">As we began our research on
Wolf-Hirschhorn back in early 2012 one of the things that struck as scary were
the possibility of seizures. 90% of kids with WHS have seizures yet every
family we know, through the support group, has a child who has had at least one
seizure. Therefore, our research tells us 100% of children have seizures.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Just like everything else we
have anticipated with WHS we expected JD’s future seizures were going to be the
Hollywood afterschool special version. Very intense with a long ambulance ride and
extremely traumatic for all of us. But in true JD fashion he eased into his seizures
with swagger. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Please know I am in no way
downplaying the severity of seizure activity. They can be very scary, very
dangerous, and very harmful . . . yet, for us, as we do we with everything else
JD encounters along his journey, we find the positive side to the story. It is
a blessing he eased into his seizures and for that we are very grateful.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Around 5 months JD started to
slightly jerk or twitch or blink at random times throughout the day. No pattern
just a little twitch here or a few head shakes there maybe a couple of eye
blinks to top it off. So, I added it to my list of questions for Dr. D and
pushed it aside. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">(sidenote: I go in with no less than 9 questions each
visit to which he usually says “let’s start off with your questions and go from
there.” If I used hashtags I would say something like #howtodealwithatypeAorganizedmomwhospent8yearsinadvertisingtryingtostayaheadofpotentialproblems<span style="mso-spacerun: yes;"> </span>. . .but I don’t use hashtags)</span></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">September</span></i><span style="font-family: Arial;">:
The wonderful pediatrician Dr. D was not overly concerned but had a
conversation with the head of Neurology at Lurie’s (only the A Team for JD).
Dr. Neurology (figured it easier to call them by their specialty rather than
their name) wanted to do another EEG (JD had a baseline EEG during his NICU
stay). This way she could compare any difference between the two. We ended up
doing the EEG as an inpatient when JD was in the hospital overnight back in
September. As we were being discharged Dr. Neurology breezed by with a thumbs
up telling me his EEG looked good. Ooooookay, now what?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">October</span></i><span style="font-family: Arial;">:
The jerking and blinking continued with more frequency and some patterns. It
was agreed with D. D we would see Dr. Neurology in person without another EEG.
The initial EEGs were done when he is sleeping and at the time JD was not
displaying this activity during restful periods. Rather than sit through <i style="mso-bidi-font-style: normal;">another</i> EEG only to receive <i style="mso-bidi-font-style: normal;">another</i> thumbs up we wanted Dr.
Neurology to see him in person. The meeting went well and it was confirmed this
was not seizure activity. She felt it was spinal cord immaturity and reflexes to
external or internal stimulus. It should also be noted his reflux issue was
getting worse around this time which we believed contributed to much of the
blinking. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">January</span></i><span style="font-family: Arial;">:
Over time the jerking slowed and throughout the month of January disappeared.
However, we were now at 9 months when seizures start to show themselves leaving
Nate and I playing the fever game. Reverse any increase in body temperature
immediately. JD usually feels warm to the touch but hangs out at high 97 or low
98 degrees so anytime he gets into 99 we went into to full-blown management
mode. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">What does a fever have to do
with seizures? From what we have read about the other families in the group
almost every first seizure and those after are preceded by a fever. We felt if
we could keep the fevers at bay then maybe we could keep his seizures away<span style="mso-spacerun: yes;"> </span>. . . at least for a little while.
Those of you who know us know we are naive. From day one Nate and I knew JD
would in fact, have seizures. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">The science geeks out there will love this</span></i><span style="font-family: Arial;"> – they (they being scientists and researchers) have
done research where they think they can isolate the segment within the 4<sup>th</sup>
chromosome that can control seizure activity. Therefore, if that segment is
missing seizure activity will be hard to avoid. And you guessed it JD is
missing that segment . . . along with many, many other segments. Whether or not
the research is correct does not matter. Nate and I always knew JD would have
seizures. We are Preppers not the crazy Doomsday type Preppers, but we like to
be prepared.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">February</span></i><span style="font-family: Arial;">:
During the first week in February JD’s jerking activity got worse. One day in
early February he jerked, twitched, and cried on and off for 30 minutes. Yet,
his oxygen levels were still good. One of the most important things is to
ensure he does not have a lack of oxygen during a seizure. At that point I was
not even sure it was a seizure because he had been jerking and twitching a lot
in the recent days. Instead of calling the doctor I managed it myself. I hooked
him up to his oxygen and his monitor and sat rocking him until he settled down.
During his jerking activity I recorded the event to show Dr. D as we had an
appointment the following week. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">In hindsight I should have
called Dr. D at that time but I do not want to be “that mom” who calls for
ridiculous things. I prided myself on not being that mom with Connor so I don’t
want to be that mom with JD. <i style="mso-bidi-font-style: normal;">(Confession:
One time I called Dr. D when Connor was 9 months old because he ate a fly. I
have regretted it every day since). </i>After this seizure event Dr. D has
reassured me that even if and I quote “JD farts the wrong way” I am allowed to
call the office and no one will think twice. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Over the next few days he
continued to jerk and twitch a bit but he never had another long spell. When I
showed the video to Dr. D he ordered us up another EEG ASAP. It was the day
before Valentine’s Day and Nate was out of town when they called to tell me
JD’s EEG was the following day. I was instructed to keep JD awake until
midnight then wake him up at 4am<span style="mso-spacerun: yes;"> </span>.
. . oh, so part of the test includes a tired and nervous sleep-deprived mother
as well as a sleep deprived patient. Got it! </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">While Valentine’s Day might
not have included some Pinterest gem it did include spending time with two
handsome little boys and one hot husband.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;"> </span></div>
<div class="MsoNormal">
<span style="font-family: Arial;">The outcome of our third
EEG: Houston, we have seizure activity. </span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivqbfgOZcLZ-HzT9qGaknJAfoSD0vheTOf7N61uo2xb8-qmbKt11L0kqZbQ5N44T42K4CI8zaJPKqK0iS4VBCixfWIORryJakQARE0Ch-VHkEvUES3pe0KjN_uJUQaJs47MistZR7ScIU/s1600/IMG_1936.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivqbfgOZcLZ-HzT9qGaknJAfoSD0vheTOf7N61uo2xb8-qmbKt11L0kqZbQ5N44T42K4CI8zaJPKqK0iS4VBCixfWIORryJakQARE0Ch-VHkEvUES3pe0KjN_uJUQaJs47MistZR7ScIU/s400/IMG_1936.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I am so tired, please let me sleep</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxAP0D_P-SB6rquELEFospB4Xdf-K9Zy8AFrQscEffPtPsQDcEKv0Gj2n1GqA4TOKTxJz6SS9USoZjQRB5kuQJNJbLcQDGT4OD7XSDQ9Slgu3fQVu2WZT1jeqYTPje3o-m_pEtx_RGeQM/s1600/IMG_1938.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxAP0D_P-SB6rquELEFospB4Xdf-K9Zy8AFrQscEffPtPsQDcEKv0Gj2n1GqA4TOKTxJz6SS9USoZjQRB5kuQJNJbLcQDGT4OD7XSDQ9Slgu3fQVu2WZT1jeqYTPje3o-m_pEtx_RGeQM/s400/IMG_1938.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thank goodness I have no hair or it would be even less fun taking off the tape</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhj_dv7KqD_7-k3UalZC4_4EgJ5NhOhaY6ebVn-4qDtVyxNdFPFKk5ll9iFL-QrLylMhfn3CrROieYtttqDzthvvELZpfG2r7PwS3IMEDdtp9SR6HwxBWBuW7108w58BEJsdTHBd62FMtQ/s1600/IMG_1940.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhj_dv7KqD_7-k3UalZC4_4EgJ5NhOhaY6ebVn-4qDtVyxNdFPFKk5ll9iFL-QrLylMhfn3CrROieYtttqDzthvvELZpfG2r7PwS3IMEDdtp9SR6HwxBWBuW7108w58BEJsdTHBd62FMtQ/s400/IMG_1940.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All these wires and I still look damn good</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Good News</span></i><span style="font-family: Arial;">:
JD’s background EEG (baseline) has not disintegrated meaning his brain is
producing the jerking movements but when he is not seizing his brainwaves return
to normal. In fact, Dr. Neurology believes these are <a href="http://growingupgawel.blogspot.com/p/medical-jargon.html" target="_blank">Myoclonic seizures</a>, which
are not as severe as <a href="http://growingupgawel.blogspot.com/p/medical-jargon.html" target="_blank">febrile seizures</a>. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Before you ask, yes these
can and most likely will turn into big, bad seizures at some point. However, as
I mentioned before, in true JD <i style="mso-bidi-font-style: normal;">laizzez
faire</i> fashion we had no huge dramatic experience where we had to call an
ambulance and fight for answers. Alternatively, JD eased us into the “scary” world
of seizures with class. Dr. Neurology also told me he was the healthiest
looking kid she had seen in a long time and he looked stronger than the last
time she saw him. JD just looked at her and said, “obviously.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">We have now finished our
first week of seizure medicine and have seen improvements with his jerking and
twitching. Next week we go back for a 6 hour video EEG to discuss further
options and issues. But for now JD uses the few jolts here and there to force
me to take a pause during our workout therapy sessions. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Warning: the next post will
be long as but very informative. </span></div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com1tag:blogger.com,1999:blog-1180946282070400491.post-38030911109486451122013-02-10T20:43:00.003-08:002013-02-10T20:43:51.001-08:00The Announcement Email: One Year (and a few days) Later
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<div class="MsoNormal">
<span style="font-family: Arial;">We are back. Gosh, I really
enjoy writing this blog but thus far in 2013 Time has not been my friend.
However, who needs Time as a friend when I have so many other wonderfully
supportive friends (unlike Time). </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">When we first received JD’s
diagnosis I read many, many, many blogs from families all over with all sorts
of diagnosis. While each family, child, situation was different there was a similar
thread which ran through most of the stories . . . it is lonely to be a mom of
a child with special needs. Hmmmm, “why?” I wondered.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Do people pull away once
they hear the words “special needs?” Are they uncomfortable around you? Do your
friends and family stop talking to you because they don’t think you can handle
hearing about their children? Do people judge you for being happy with what the
world and society may deem an “imperfect child?” Why do moms feel so alone once
the words special needs come into their lives? These were questions which
weighed heavily on me everyday<span style="mso-spacerun: yes;"> </span>. .
.<span style="mso-spacerun: yes;"> </span>that is until we sent out our
announcement email. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">There were a total of 43
days between the time we first heard the word “abnormality” and when we introduced
JD’s syndrome to our world. During those 43 days only 7 people knew the Gawel
family path had taken an unexpected turn. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">During that time we attended
birthday parties, family gatherings, the holidays, even my beautiful
grandmother’s funeral with the full family in attendance without anyone knowing
the difference. Questions were asked “are you excited” “do you think the baby
is a boy or a girl” “how are you feeling” “is Connor excited to be a big
brother?” With ease we answered each question with a smile but our smile lacked
a sparkle (no one noticed but we did). Would these willing participates in JD’s
life still be around once we told them JD was missing his full set of
chromosomes? Would the tight hugs get a little softer and less frequent once
JD’s future was revealed? According to many of the blogs and stories I had read
the answer would be “yes.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">The day came to send out the
email announcing James Douglas to our friends and family. We had waited long
enough. I was ridiculously nervous. Not only because I was worried what people
would think but once we told people Wolf-Hirschhorn would became real. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">It was a Sunday night, Nate
was in bed and I read the email and the first blog post over and over and over
again until the words melted together. I waited to hit the send button until I
could no longer keep my eyes open. After I finally hit the button I sat on the
sofa waiting to feel relief or scared or nerves or something . . . then the
text message on my phone dinged. While the EST and CST were snuggled in their
beds the PST were doing their last checks of the Internet before heading off to
bed. Darn – forgot about the west coast feed. Yet, within two minutes of
sending that late night email on January 28, 2012 I received my first words of
encouragement from my fabulous west coast friend Sara. That was all I needed to
head to bed.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">By the next morning before
the world was awake I already had 20 emails waiting to give me virtual hugs.
The emails, comments, calls, and love started flowing and have not stopped. I quickly
realized it was preposterous of me to think I would have anything but
supportive people in my life. How selfish of me not to give my friends and
family enough credit to know they would not care if JD was lacking part of a
chromosome. In fact, everyone seemed even more excited to meet the little man.
Let’s be honest, with a second pregnancy people are happy for you but it is not
as exciting as the first one (sorry 2<sup>nd</sup>, 3<sup>rd</sup>, 4<sup>th</sup>,
etc children but it is true – you just don’t have time to be as focused).
However, JD gave the second pregnancy a boost to keep people interested (almost
like a Hollywood film – see I was destined to be a film director).</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">All my concerns about being
a lonely mom vanished. In fact, JD has opened the door to more important people
in our lives then ever before. I am blessed to say I am <i style="mso-bidi-font-style: normal;">not</i> a lonely mom of a special needs child. I am a loved mom of two
amazing little boys who has more friends today then I did on January 28, 2012.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Sidenote: Apologies for a lack of blog entries over
the past month. 2013 has started off quite busy and somewhat rough . . . but JD
is doing better (he was under the weather) and the snow is melting. There are
lots of wonderful things to update in the upcoming months so stay tuned for
more entries about JD – less fluffy stuff I promise but I needed to get one
more out. </span></i></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJQYQLf-kVkpuNGH1F3HDUgYxbqEbhUiNfuNqxhkh_r_VRbk9ACkaxe30o6jrfxNd6vcxai7vA_yMDkMmzdHniBbwhKP2KoUTzBbJEDEWDYeRMp5LYD-_XPUDBpbfbwSYY4vAD0x_x-vA/s1600/IMG_3302.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="424" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJQYQLf-kVkpuNGH1F3HDUgYxbqEbhUiNfuNqxhkh_r_VRbk9ACkaxe30o6jrfxNd6vcxai7vA_yMDkMmzdHniBbwhKP2KoUTzBbJEDEWDYeRMp5LYD-_XPUDBpbfbwSYY4vAD0x_x-vA/s640/IMG_3302.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Who could be lonely with these two faces</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com0tag:blogger.com,1999:blog-1180946282070400491.post-76333297952008135202013-01-03T22:26:00.000-08:002013-01-03T22:32:33.250-08:00Wolf-Hirschhorn Syndrome: One Year Later <style>
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<div class="MsoNormal">
<span style="font-family: Arial;">When you wake up on the day
that changes your life it does not feel any different than the day before or
the day before that. You might have funny feeling in your stomach when you roll
out of bed or something might seem “off” yet you can’t put your finger on it…but
for the most part, days that change your life start off as any other day. Your
alarm goes off, you start your routine and never think twice about how each
ticking minute that passes is propelling you towards a whole new path. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">On January 3, 2012 I woke up
with a strange feeling in the pit of my stomach. And on January 3, 2012 I went
to bed with puffy red eyes, a heavy heart, and a future that went from bright
and shiny to the blackest black.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">The <a href="http://growingupgawel.blogspot.com/p/from-beginning.html" target="_blank">original post</a> explains the events of the day but it barely touches
on the feelings. As I researched Wolf-Hirschhorn on January 3rd the WHS.org
site was <i style="mso-bidi-font-style: normal;">ironically</i> unavailable.
Instead of reading all the wonderful stories of strong families and amazing
children I clicked on a site which displayed dated pictures of individuals with
WHS along with a series of numbers. At the time I had no idea what the majority
of the numbers meant (I later learned they were the deletion classifications),
however, one set of numbers was very clear to me. They were two dates: the
first a birth date followed by a dash and the second date . . .well you can
guess what comes after the dash. I quickly scrolled through the pictures faster
and faster doing rough mental math to calculate how old each of these
individuals were when they past away. I don’t know what I was looking for but I
could not look away. I finally closed the computer and could not speak.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">As I have said before, life
has a way of writing your story in a particular order. With the WHS.org site
down I was forced to read old, dated, inaccurate data on other sites. It
actually stopped me from doing additional research. Reading the very harsh
wording and numbers from the other sites made me close the computer and stop. I
am not one to put full trust into the Internet so I was not going to spend my
evening learning nothing of value. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">However, the next day I
slowly opened my computer and typed <i style="mso-bidi-font-style: normal;">Wolf
Hirschhorn Syndrome</i> into Google one more time and this time WHS.org greeted
me with open arms. It was a clean site (I don’t like clutter) with sweet
pictures of very happy, adorable children. I started reading what
Wolf-Hirschhorn was from a different perspective, a dad. WHS.org was started by
a father as a way to bring a very small, elite community together. The words
were softer, less harsh, more realistic than the other sites. My own healing
started when I “met” Kendall and Kaylee and Tyler and Riley and Dylan and so
many more of JD’s future peers. These were families just like us who have a
child missing a piece of their 4<sup>th</sup> chromosome and yet that child adds
wonder to the whole family. The children in the stories were smiling and
walking and talking and laughing with their siblings. The children were bright
and loving and their eyes were filled with innocence. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Most families had additional
blogs outside of the WHS.org stories so I started to read and read and read. I
stayed up until 2am night after night after night reading more and more about
these families. Through the blogs, Wolf-Hirschhorn started to seem more common
and less scary. Sure there were medical complications and children who were
very sick but there were also families full of love and happiness. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Let me be clear, at this
time I still saw my future as black with no light (the light started to shine
through the day JD was born but more on that later). Tears flowed daily and
often yet with each day I cried a little less. I was still scared and hurt and
questioning how we got on this path. BUT . . . I started to get to know the
other families and I liked them. I wanted to meet them and I was kinda excited
to join their club. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">On January 2, 2012
Wolf-Hirschhorn Syndrome did not exist. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">On January, 3, 2012
Wolf-Hirschhorn Syndrome was frightening, unfathomable, incomprehensible and a
nightmare.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">On April 2, 2012
Wolf-Hirschhorn Syndrome became love and hope.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">On January 3, 2013
Wolf-Hirschhorn Syndrome does not define our family. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7WrDAcyjvV1tdmNNVEBIDJjKBSJVSu06yqtmn1ywUZEpRs8-zA9zOlFz8eNXw12ChimOEgM5jsaMZR0rcZyTsMwCD0Q7kxSjYWeEjKtORrPh7czPT-neVniZyvwlpPwF0Dwj4scUcBFE/s1600/DSC_1500_e.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7WrDAcyjvV1tdmNNVEBIDJjKBSJVSu06yqtmn1ywUZEpRs8-zA9zOlFz8eNXw12ChimOEgM5jsaMZR0rcZyTsMwCD0Q7kxSjYWeEjKtORrPh7czPT-neVniZyvwlpPwF0Dwj4scUcBFE/s400/DSC_1500_e.jpg" width="265" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Wolf-Hirschhorn is not the
focus but rather in the background. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh01rME7fWHto_RCtsVkSdY48-uh8RMDlYy0fHWlJfZ5zMJyE6JAb7onm3U8pwSzzsGv9I5fq9SY7RqKA2WKQp8o5gTxA1Uyf6e7rEgYTgsIEqafnu7kU3PyynxP3mEPe2hqx5q3PvZdU/s1600/DSC_1428_e.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh01rME7fWHto_RCtsVkSdY48-uh8RMDlYy0fHWlJfZ5zMJyE6JAb7onm3U8pwSzzsGv9I5fq9SY7RqKA2WKQp8o5gTxA1Uyf6e7rEgYTgsIEqafnu7kU3PyynxP3mEPe2hqx5q3PvZdU/s400/DSC_1428_e.jpg" width="400" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Wolf-Hirschhorn is not specials needs. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjxFgXilsNTo78NHbH3quNYZuGihPTKcwwyQV4d8JO7LJ6ifhXjnQiNqs1smtetWR0fQ-RTnxrtVfoVQp-sQtMlpvfcMZOlK58tH-V5l0_WZ1WyGF3suGxeTJd6sMw3tNkBJwlBR1NtUk/s1600/DSC_0709_e-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjxFgXilsNTo78NHbH3quNYZuGihPTKcwwyQV4d8JO7LJ6ifhXjnQiNqs1smtetWR0fQ-RTnxrtVfoVQp-sQtMlpvfcMZOlK58tH-V5l0_WZ1WyGF3suGxeTJd6sMw3tNkBJwlBR1NtUk/s400/DSC_0709_e-1.jpg" width="400" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Wolf-Hirschhorn is a loving family with a handsome little boy whose big brother
looks at him on a daily basis and says “I love JD! He’s so cute.” <span style="mso-spacerun: yes;"> </span> </span></div>
<div class="MsoNormal">
<br /></div>
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<span style="font-size: large;"> </span><span style="font-family: Arial; font-size: large;">On January 3, 2013 Wolf-Hirschhorn is
our blessing.</span><br />
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Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com5tag:blogger.com,1999:blog-1180946282070400491.post-36584332794224922772012-12-21T21:47:00.003-08:002012-12-21T21:47:59.063-08:00The Decision: One Year Later
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<div class="MsoNormal">
<span style="font-family: Arial;">One year ago today, on
December 21, 2011, I did something I said I would never do, I agreed to an
amniocentesis. It was also on that day that I made the drastic realization that
I would never again make another grand sweeping statement such as “I will never
have an amnio” (although that itself is a pretty grand sweeping statement). How
did I go from declaring I would never agree to an amniocentesis to confidently
walking into the hospital on December 21<sup>st</sup> for the scariest test of
my life? Well, for that we have to go back a few years... </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">As you have probably noticed
from past posts I enjoy analyzing how our life stories come to be. How one seemingly
insignificant detail can shape the rest of your life. It’s what I call the
Sliding Doors effect</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; tab-stops: .5in;">
<span style="font-family: Arial;">For those of you who have not heard of the 1998
slightly boring Gwyneth Paltrow movie, <i style="mso-bidi-font-style: normal;">Sliding
Doors</i>, here’s the main plot: the movie follows her life in two story lines
– one story where she makes her train and the other where the doors slide close
right in front of her therefore missing the train and changing her whole life’s
outcome.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">While the movie was subpar
the concept was fascinating and I am forever finding Sliding Doors moments in
my life and marveling in how a split second can change my life. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">I met my best friend, future
Matron of Honor and future Godmother to Connor, Lauren at a bus stop when we
were 12 years old. Our friendship came easily as we quickly discovered we were
the exact same person with the same likes and dislikes . . . especially in the
very important tween area of celebrity crushes. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">It was through Lauren I met
the person who would ultimately help Nate and I make the toughest decision of
our lives. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Erin was one of Lauren’s
oldest friends from growing up. Erin did not live near us so I only heard stories
about Erin until we finally met in person years later when she hosted (along
with her wonderful mother) a fabulous bridal shower for Lauren. It was then I
was able to see all the brilliant things Lauren was talking about. Over time,
Erin and I continued to see each other at Lauren’s family events and with Facebook
we too became dear friends. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">When Lauren and I were both pregnant
with our first child Erin announced she too was pregnant with child #4 and due
one month after Connor. <span style="mso-spacerun: yes;"> </span>A few
months after announcing she was pregnant Erin followed up with the email I would
later read and reread to give me strength and courage to send my own email.
Erin’s email started out simple “Nick and I received the news that we are
expecting a baby boy and that our boy has Down Syndrome.” My heart skipped a
beat. My first thought was not “I’m sorry” or “poor Erin, how sad.” Instead, my
very first thought was “wow, this little boy is incredibly blessed to be born
into such a loving, strong, amazing family.”<span style="mso-spacerun: yes;"> </span>And that is exactly what I told her. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal">
<span style="font-family: Arial;"></span><span style="font-family: Arial;">Over the past 2 years I have
watched as Erin has created an amazing life for little Ben and all her children.
Those two years of experience were very much needed when I finally gathered the
strength to call Erin on December 16<sup>th</sup> 2011 to talk about the abnormalities
found at our 20-week appointment.</span>
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">As I mentioned in my
<a href="http://growingupgawel.blogspot.com/p/from-beginning.html" target="_blank">original post</a>, I will not go into details but I will say that phone call shaped
our future. My “I will never have an amnio” slowly started to fade as I
listened to Erin tell her full story. It was Erin’s story that helped us make
the decision to move forward with the amniocentesis. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">During our conversation Erin
mentioned something that has always stayed in the back of my mind. Erin, in all
her spare time with four kids, volunteers at the hospital to talk with mothers
who have a surprise diagnosis of Down Syndrome (<i style="mso-bidi-font-style: normal;">I told you she was amazing</i>). </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">She told me a story of a
woman who had a little baby boy about 7 months after Ben was born. When she
talked with this woman at the hospital the new mom asked “<i style="mso-bidi-font-style: normal;">do you ever wish Ben did not have Down Syndrome?”</i> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Erin said, <i style="mso-bidi-font-style: normal;">“if Ben did not have Down Syndrome then he
would not be Ben and you might as well give me another baby and I don’t want
another baby so NO I do not wish Ben did not have Down Syndrome.”</i> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">As she told me this story I
just started crying because I thought, “<i style="mso-bidi-font-style: normal;">Erin
is so great, what a great heart . . .but I will never get there. If the amnio
tells us something is abnormal I will never get to the place where Erin is with
Ben.”</i> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">And yet, it seemed I under
estimated myself and little JD before I even met him. But that realization did
not come until later. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">One year ago today our amnio
results came back “normal” meaning we were 99% in the clear for a genetic
anomaly. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">One year ago today I was
rejoicing it was not a genetic syndrome. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">One year ago today I stopped
crying believing that our family’s future would not be lost.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">One year ago today my heart
was not as big as is it now. Just like the Grinch, JD has helped my heart grow
to hold more love. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">One year ago today I had no
idea how my life would change over the next 12 months . . . and how that change
would be the best gift I never asked for.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">So if I could go back more
than 2 decades to that day at the bus stop I would tell my 12 year-old self: <i style="mso-bidi-font-style: normal;">Hold on tight to Lauren as a bestie your
whole life. Not only will she be there for you through some of your best and
worst times but she also holds the key to your most important Sliding Doors
moment. </i>Then I would say: <i style="mso-bidi-font-style: normal;">Don’t pick
the blue prom dress – seriously keep looking.<span style="mso-spacerun: yes;"> </span></i></span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4Z6nGein-kUJlbBykS6lpar_FBFkXlCXuQF1JaRhaXBhJe2E0Zd5CPq1JnYeV6qg_g2h4GUV5Gzlf1QHZiKSOk9HyvXcm_05kf91HlANb0zd12Ssx4lM4k0eImceFf6mVbQV4O1-UpGw/s1600/IMG_1695.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4Z6nGein-kUJlbBykS6lpar_FBFkXlCXuQF1JaRhaXBhJe2E0Zd5CPq1JnYeV6qg_g2h4GUV5Gzlf1QHZiKSOk9HyvXcm_05kf91HlANb0zd12Ssx4lM4k0eImceFf6mVbQV4O1-UpGw/s400/IMG_1695.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Good-night friends</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com4tag:blogger.com,1999:blog-1180946282070400491.post-24337194829897669002012-12-14T22:23:00.000-08:002012-12-14T22:23:15.513-08:00The Beginning: One Year Later
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<div class="MsoNormal">
<span style="font-family: Arial;">I’m a celebrationist. I love
celebrating minor events with big excitement. Green milk and Lucky Charms on
St. Patrick’s Day, a fabulous tea party for the Royal Wedding (big thanks to
Aunt Katie/Nia for hosting that one) and don’t even get me started on the
Olympics. Being a celebrationist also means reflecting on events from the past.
It puts a smile on my face when I remember the Christmas season while living in
the Gamma Phi house or seeing Nate walk into the party on the first night I met
him. <span style="mso-spacerun: yes;"> </span>With each year every date
takes on a new meaning. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: Arial;">On September 27, 2007 we closed on our first home. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFiw5LMhrcg_TgGVOuN3p0o81RLLQq9xrUpvwZbJwbLDdCKbhOq_O95uscEaeAb9NGUx3e-E3xERYuXQYNYyvwzWHpGS0bk9yZMdqNIzuKEqAlwj5W9jVAqLKVCbYTNMlQUlFrge9JrF0/s1600/IMG_1463.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFiw5LMhrcg_TgGVOuN3p0o81RLLQq9xrUpvwZbJwbLDdCKbhOq_O95uscEaeAb9NGUx3e-E3xERYuXQYNYyvwzWHpGS0bk9yZMdqNIzuKEqAlwj5W9jVAqLKVCbYTNMlQUlFrge9JrF0/s400/IMG_1463.JPG" width="300" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: Arial;">On August
11, 2011 Connor took his first step. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgew_RNZ6pqOhKNdCzuBMGj5UdHYTVCtKI1ICrdCndyflIOApEE1C0lfHL3ffxhKxx2wXZAAWTT2M4NLp9onfhydRW4JMANVY7mbp2oGRViPLKGQLYxmdz8Jzfagne5JL8ZfhrkaFwXkK4/s1600/IMG_6975.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgew_RNZ6pqOhKNdCzuBMGj5UdHYTVCtKI1ICrdCndyflIOApEE1C0lfHL3ffxhKxx2wXZAAWTT2M4NLp9onfhydRW4JMANVY7mbp2oGRViPLKGQLYxmdz8Jzfagne5JL8ZfhrkaFwXkK4/s400/IMG_6975.jpg" width="266" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: Arial;">On December 15, 2011 were told by doctors <i style="mso-bidi-font-style: normal;">“we noticed a few abnormalities”</i> at our
20-week ultrasound. </span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidfv-ycf6aFcbeVLjF-_pzj_sJZAFsw8rMiAQya7Am1pLPFMuwFAU6UCBHhzo_EhdhkPdNixbcXbM02aEfFKRRbVlonuCDh_CiscgZfEx4dHX_3N6sId_sfimsyhAnuP97BLvlRRhLCb4/s1600/IMG_8975.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidfv-ycf6aFcbeVLjF-_pzj_sJZAFsw8rMiAQya7Am1pLPFMuwFAU6UCBHhzo_EhdhkPdNixbcXbM02aEfFKRRbVlonuCDh_CiscgZfEx4dHX_3N6sId_sfimsyhAnuP97BLvlRRhLCb4/s320/IMG_8975.JPG" width="286" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Heading to our 20 week ultrasound (Apologies for this picture as I look horrible - no pregnancy glow here)</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Each year every date takes on new meaning <span style="mso-spacerun: yes;"> </span>. . . for better or worse.</span><span style="font-family: Arial;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">As we wrote in the original
introduction email to all our friends and family December 15, 2011 is a day we
will never forget. On that day, we were <i style="mso-bidi-font-style: normal;">pushed</i>
down a very long, dark, scary road with no direction just blind faith. Little
by little that road became a tiny bit brighter and slightly less scary. I purposely did not reread our<b> </b><a href="http://growingupgawel.blogspot.com/2012_01_01_archive.html" target="_blank"><u>original post</u></a> because I wanted my thoughts and feelings for 12/15/11 to be pure.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">From what I remember Nate
and I were scared. Extremely scared. That first day was such a shock we did not
know where we would go from there. It did not seem real. I kept hoping
everything would be fine. We had nothing to worry about. But deep down I felt
it starting to bubble and I knew from those few words “noticed a few
abnormalities” our lives were forever changed. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">After attending Nate’s
holiday party this past Thursday night it is still hard to believe we picked
ourselves up to attend his party last year on the same day we received the
news. In the hopes of not sounding annoying I am very proud of us. Some of our
best friends were at the party with us that evening of December 15<sup>th</sup>
and yet they had no idea we had spent hours that afternoon crying. Earlier in
the day my friend, who was also pregnant, had genetic testing with the doctor
we would soon get to know very well. <i style="mso-bidi-font-style: normal;">“The
doctor said everything was fine and we have nothing to worry about.”</i> As she
spoke those words I just kept thinking <i style="mso-bidi-font-style: normal;">“will
we hear those same words from the same doctor when we meet with him next week?”
</i></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Above all, the hardest part
of the day was being around Connor. My thoughts kept drifting back to him and
wondering how this would change his future. I cried thinking I might not be
able to provide the life he deserved. Looking back now I realize how silly my thoughts
were but it was understandable. On the 15<sup>th</sup> we knew there were
potential challenges ahead but everything else remained a soon-to-be-uncovered
mystery. It was quite overwhelming and scary.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEap5tbgaBc5JutWDCoEoL7_zYdu68qqORR46nZMqIyawB0vJf2sI0GmyKxKs8lC7hlYzVJPYeVG_EmhuR-Nn95q5WCqRcqDnSlrfW0-8aPuEkQN1GYqNFmXcVhrclDey3s5C_TAQYtAo/s1600/Gawel-301+3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEap5tbgaBc5JutWDCoEoL7_zYdu68qqORR46nZMqIyawB0vJf2sI0GmyKxKs8lC7hlYzVJPYeVG_EmhuR-Nn95q5WCqRcqDnSlrfW0-8aPuEkQN1GYqNFmXcVhrclDey3s5C_TAQYtAo/s400/Gawel-301+3.jpg" width="266" /></a></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: Arial;"> </span>
<div class="MsoNormal">
<span style="font-family: Arial;">I will never regret my
feelings of sadness I felt on that first day (or any day after) because that is
how people grow. Without those feelings I would never have known the glorious
emotions I have experienced since seeing JD for the first time. As a
celebrationist, these next few months will be very ceremonial as we remember where
we were this time last year. (Yes, I will be writing blog posts about these
special dates – sorry it’s what a celebrationist does). I don’t want to spoil
the ending but I can say with 100% honesty if I had a chance to change anything
or take away JD’s syndrome I would say “No, Thank You.” JD has added more
experiences, joys, and love to our family than we would have ever predicted. On
December 15, 2011, I could never imagine I would be blessed with the life I
have now. That very long, dark, scary road is no longer dark or scary. It’s
still very long but it is much brighter with unexplored opportunities ahead. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial;">Sidenote: My friends think it is hilarious (and
slightly ridiculous) that I am a self-proclaimed celebrationist. However, I
think I have inspired a few more celebrationist in the group so it can’t be all
bad.</span></i></div>
Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com4tag:blogger.com,1999:blog-1180946282070400491.post-40541565529778251132012-10-22T20:16:00.003-07:002012-10-22T20:47:34.957-07:00Happy 6 Months<style>
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<i><span style="font-family: Arial;">Side note: Nate and I created a group in Facebook called Team JD to keep everyone updated on JD's adventurous life. You can expect to see the invitations from us in the next few days. We will continue to update the blog but for quick hits we will update on the Facebook group. With our numerous appointments and an active yet adorable 2 year old I am having a harder time updating the blog on a regular basis. Many of you always send your love asking about JD and this will give you quicker updates. We will post the blog updates on the page as well as the day-to-day happenings of James Douglas. </span></i><br />
<i><span style="font-family: Arial;"><br /></span></i>
<span style="font-family: Arial;"><i>Please feel free to remove yourself from the group if it is too much or if I forgot anyone I am happy to add them to the group. Just let me know. Thank you for all your support for JD he appreciates the attention.</i></span><br />
<span style="font-family: Arial;"> </span><br />
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<div style="text-align: center;">
<span style="font-family: Arial;">******************************************* </span></div>
<br />
<span style="font-family: Arial;">We have had 38 appointments
and one hospital stay since I last updated the blog over a month ago. Take away
weekends and that averages to about 1½ appointments per day. Please forgive my
lateness for this update. </span><br />
<br />
<span style="font-family: Arial;">Through all of our
appointments we are thrilled with JD’s progress -- yet the conversations have
gotten real. For the first 6 months we have worked on helping him grow and get
stronger. Good news, both of those things have happened therefore it is time to
discuss how to keep him growing and strong. Those conversations are a bit more
intense as the words “surgery” and “long-term” are thrown around. Going in we
were fully aware JD would need surgeries throughout his life but we have been
in a utopia with only one very minor surgery for his GTube placement up until
this point. Team JD is amazing and we have full confidence in our doctors, but
we are ramping up our prayers.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim8z1aV89PzqgeiDVjFYFzqaz8vNnx9EQXsd5c79H3whGZAM2s-rVrw10hpDbx2iEU-yos3msj6GvLGQ5Hwujv6uslw9vtRLpzWDZPd_18BxzAxZvvCsUOH3A5qHUYKNwYdpi5rwdOII4/s1600/IMG_2456.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim8z1aV89PzqgeiDVjFYFzqaz8vNnx9EQXsd5c79H3whGZAM2s-rVrw10hpDbx2iEU-yos3msj6GvLGQ5Hwujv6uslw9vtRLpzWDZPd_18BxzAxZvvCsUOH3A5qHUYKNwYdpi5rwdOII4/s1600/IMG_2456.jpg" width="266" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNfLGSR44b-OXqEdhNat-X-hrBP0rZAFSd1EThuKqzGL2p2Pe7yIyt4GSVtIdA5K1h07j2yIu89E3kAME5y-IWvvL3rzs9JGFOitTsP7vaPX3O9Xmk8tfviuKwwrRUd7B2fk-se9NnpnI/s1600/IMG_2424.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNfLGSR44b-OXqEdhNat-X-hrBP0rZAFSd1EThuKqzGL2p2Pe7yIyt4GSVtIdA5K1h07j2yIu89E3kAME5y-IWvvL3rzs9JGFOitTsP7vaPX3O9Xmk8tfviuKwwrRUd7B2fk-se9NnpnI/s1600/IMG_2424.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I make leg warmers look tough</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqvMdzHYHXsOJpOqjQHUiLW-VDpED7oKJItPnSZ1XEA2ytBBeezmNAQoQtcK9OmHTQysWXKNg8uW9l7t5UQG8TVt9K_K-V1CX3hox9iNB4qgsJUc56TNleicimEOv-Yquj4iqgrzI_GLk/s1600/IMG_2427.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqvMdzHYHXsOJpOqjQHUiLW-VDpED7oKJItPnSZ1XEA2ytBBeezmNAQoQtcK9OmHTQysWXKNg8uW9l7t5UQG8TVt9K_K-V1CX3hox9iNB4qgsJUc56TNleicimEOv-Yquj4iqgrzI_GLk/s1600/IMG_2427.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Already protecting his little brother</td></tr>
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<div class="MsoNormal">
<span style="font-family: Arial;">A few updates from the past
month . . .</span></div>
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<br /></div>
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<i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">Nuerosurgery</span></u></i></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Big Updates</span></b><span style="font-family: Arial;">:
Tummy time is allowed without the collar to help strengthen his neck. Continuing
to wean only 3 hours of collar-free time per day.</span></div>
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<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Surgery Update</span></b><span style="font-family: Arial;">: Turns out his neck misalignment starts at C1-C2 on the cervical spine
– basically right at the base of the skull. Depending on how strong we can
build up the neck muscles the likelihood of fusion surgery is increasing. We
will do our best to work on his neck and have the surgery conversation once Dr.
A says it is time.</span></div>
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<br /></div>
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<i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">ABR (Hearing)</span></u></i></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Big Updates</span></b><span style="font-family: Arial;">:
JD finally made it through a full ABR! We were in a very small soundproof room
and the goal was to keep him asleep for an hour. Mom may or may not have caught
a few zzzz’s during the test as well. Don’t judge. </span></div>
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<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Surgery Update</span></b><span style="font-family: Arial;">: No surprise to us but it is confirmed JD has hearing loss. He can hear
but only lower tones for now. Next steps will be tubes in his ears and we will
reassess with another ABR. Until then I will keep singing “<i style="mso-bidi-font-style: normal;">You Are My Sunshine</i>” in a very low, loud, strange voice.</span></div>
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<i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">Pediatrician</span></u></i></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Big News</span></b><span style="font-family: Arial;">:
JD’s growth has slowed down. He has not gained any weight in over a month – yet
he has not lost any either. </span></div>
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<br /></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Heart:</span></b><span style="font-family: Arial;"> During
the appointment we had many questions but one in particular about his heart.
While Dr. D was listening to his heart he listened a little longer than usual
which lead to a bit of a discussion. In short, his murmur (ASD - hole in his
heart) sounded about the same when it should be lessen. Nothing to worry about
but add another appointment to our list. Originally, we were heading back to
the cardiologist 6 months after our first appointment. But given the murmur Dr.
D is sending us to a new cardiologist - “one of his guys.”<span style="mso-spacerun: yes;"> </span>More on that a bit later but I am very
pleased to see a new cardiologist . . .</span></div>
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<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Blinking</span></b><span style="font-family: Arial;">: About
6 weeks ago Nate and I noticed JD would rapidly blink three or four times
randomly throughout the day. Being the Organization Diva that I am I started
documenting these episodes down to the minute. This allowed us to the look for
patterns within his episodes. By the time our appointment came around I had yet
to find a pattern but we mentioned it to Dr. D. It did raise an eyebrow for Dr.
D leading to another appointment with an EEG. More on that later . . .</span></div>
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<br /></div>
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<i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">Cardiology</span></u></i></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Big Updates:</span></b><span style="font-family: Arial;">
JD’s ASD does not seem to be growing yet it is not getting smaller. As he grows
it is growing proportionally with him. Not great news but not terrible news
either. His large ASD is also leading to higher pressure on the right side of
his heart, which is the definition of Pulmonary Hypertension (check out <a href="http://growingupgawel.blogspot.com/p/medical-jargon.html" target="_blank"><i style="mso-bidi-font-style: normal;">Medical Jargon</i></a> for more info). That can
be a very scary term in regards to respiratory issues. However, I always find
the positive in each appointment and the best news is <u>his function looks
great</u>. What more can you ask for in regards to the heart? As we have said
for months James has a great heart and it is functioning very well. This kid rocks!</span></div>
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<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Surgery Update:</span></b><span style="font-family: Arial;"> While there is nothing to be concerned about at this time the original
timeline for surgery was around 2 years old (if his ASD did not close on his
own). However, with Pulmonary Hypertension possibly leading to more respiratory
problems surgery will likely be around his first birthday. </span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">All the surgeons will put
their heads together to discuss the order of surgeries as well as which
surgeries can be coupled together. The goal is to have him in the OR as few
times as possible. Also, the goal is not to have unnecessary surgery or
optional surgeries. What are optional surgeries? Surgeries which are not
essential to his growth and overall health and tend to me more cosmetic. </span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYAGbYMOfWwgnJq9YLLCDUaFte7x0CtMshDAvqfqo9KylfDHIo2mcmydoNXlkqJeUtulG4-SmFPvJNGblBzcnDs0Lhlx0S-ouIu1AUVzpYCw7AYIPyOo6_ufnEqStuCdbiWneYKIfKnlg/s1600/IMG_1236.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYAGbYMOfWwgnJq9YLLCDUaFte7x0CtMshDAvqfqo9KylfDHIo2mcmydoNXlkqJeUtulG4-SmFPvJNGblBzcnDs0Lhlx0S-ouIu1AUVzpYCw7AYIPyOo6_ufnEqStuCdbiWneYKIfKnlg/s1600/IMG_1236.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">These EKG cords are bigger than me</td></tr>
</tbody></table>
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<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">Hospital Stay</span></u></i></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Over the weekend of
September 22, JD started to show signs he was coming down with something. He
was coughing more and spitting up a bit (which he never does) and sneezing all
the time. Plus, his oxygen levels ping-ponged all over the board. During
Physical Therapy on Tuesday 9/25 JD seemed weak and not up to the challenges. We
cannot always have a great session so I was not worried but I kept a very close
eye on him. On the other hand, our Occupational Therapy appointment on
Wednesday, 9/26 was a great success. He was attentive and ready to work
performing some new moves for us (P.S. he LOVES his Occupational Therapist Kate
– more on that in another post) so I thought maybe he kicked whatever was
holding him up.</span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Yet he woke up early on
Thursday, 9/27 spitting up more than ever (still not very much but more for him)
and having lots of troubles swallowing. I spent the whole morning trying to
manage his oxygen levels but they just kept dropping and staying down even
after I put him on oxygen. The only time he seemed comfortable and calm was
when he was sleeping but he had to be held – <i style="mso-bidi-font-style: normal;">as a mom who was only able to hold her baby on a pillow for the first
two months of life this was a wonderful confirmation that JD knows me and needs
his mommy</i>. I had planned to spend the morning preparing for the sleep study
we had schedule that evening but instead I was rushing around trying to pack in
case we would needed to stay at the hospital. </span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">After a morning of dro pping
oxygen levels and a call to Dr. D I made the decision to head to the ER. To spare
you the details:</span></div>
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<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Good News</span></b><span style="font-family: Arial;">:
Chest X-ray looked great with no fluid in the lungs – GREAT, GREAT NEWS. A call
to the cardiologist confirmed his function looked good and there was no reason
to believe the heart was the issue. Finally, a swab test came confirming he had<span style="mso-spacerun: yes;"> </span>. . .<span style="mso-spacerun: yes;"> </span>a cold.</span></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Tricky News</span></b><span style="font-family: Arial;">:
A cold for JD can create additional complications for him. Dr. D is able to
admit directly to Lurie’s and he recommended we stay at the hospital overnight
for observation. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">It was the right decision
although going from being VIP in the NICU to a general floor was a tough
transition for us (well<span style="mso-spacerun: yes;"> </span>. . . me).
It was more of self-service model with very different nurses, however, it had a
comfy chair, an in-room bathroom, and a TV so JD and I snuggled in for the
evening.</span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9q8tx1IhKbfcRY3U2iPE_RNwUWOzOmO57eL9SefW2l4qBruI0xh7ExUed3ydFK03FdFPC35xFK83OLsrPR3wgF5RontXP26TQWg3TE1sLD5PCkxDZ6wfc9iVgWMzzAw_bM7Fi8IET3wc/s1600/IMG_1250.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9q8tx1IhKbfcRY3U2iPE_RNwUWOzOmO57eL9SefW2l4qBruI0xh7ExUed3ydFK03FdFPC35xFK83OLsrPR3wgF5RontXP26TQWg3TE1sLD5PCkxDZ6wfc9iVgWMzzAw_bM7Fi8IET3wc/s1600/IMG_1250.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Back in the ER waiting for the x-ray</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYeZ-DPq1xa-u_WuQ3h5CyuR7ILqRwONLE1PwsPXu8N-z4aWC03fkzC8QwEHnvBudW4jic_WKLEXPUYR2V2va-A0_FgOTf4Rm66xrHypzwcEM_2C4Kk2iYL4yeg2rlEk07Mj7d32rlBIY/s1600/IMG_1255.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYeZ-DPq1xa-u_WuQ3h5CyuR7ILqRwONLE1PwsPXu8N-z4aWC03fkzC8QwEHnvBudW4jic_WKLEXPUYR2V2va-A0_FgOTf4Rm66xrHypzwcEM_2C4Kk2iYL4yeg2rlEk07Mj7d32rlBIY/s1600/IMG_1255.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sick little boy</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieM3SxyTYJs8b_6A3GNfr_paPp9m51cALLtURnTiI_YaoxyxXCP7un0PAKA9YzeVYJjPqUxB-fZKiYjJDeXeg5mzZ7ekhIvDAIgiCkEh9gAECc4tQvyTHjo7uguC-fmrnwNXqYWkIkGQM/s1600/IMG_1259.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieM3SxyTYJs8b_6A3GNfr_paPp9m51cALLtURnTiI_YaoxyxXCP7un0PAKA9YzeVYJjPqUxB-fZKiYjJDeXeg5mzZ7ekhIvDAIgiCkEh9gAECc4tQvyTHjo7uguC-fmrnwNXqYWkIkGQM/s1600/IMG_1259.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My view from the chair</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh8jzi11iqv8D4kfwJzQoqg8feZiBzogkJjbhq0T2chdWSZtWtdN_JFnZQxw7f0_D9TZKKa9kAUVWSLmZUgop0mGyL_TJZAgFwhgDbUWM47GpG2lO_NILrRnLashrupqHkjcDElwJ-oYU/s1600/IMG_1261.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh8jzi11iqv8D4kfwJzQoqg8feZiBzogkJjbhq0T2chdWSZtWtdN_JFnZQxw7f0_D9TZKKa9kAUVWSLmZUgop0mGyL_TJZAgFwhgDbUWM47GpG2lO_NILrRnLashrupqHkjcDElwJ-oYU/s1600/IMG_1261.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The only way he would sleep is in mom's arms - I loved it!!!</td></tr>
</tbody></table>
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">By the morning JD seemed
stronger and I was ready to head home. Not just yet! We had a few other
appointments scheduled at the hospital for the day so we hung out until we
could see the other doctors. It was a long two days.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial;">Finally on 10/1 (Pumpkin
Spice Latte Day) JD was back to normal. Not only normal but getting stronger. </span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCoCU_fA-UbV2tXVYFX8YFa-BSdkrlQO_athIODPimNsTP5jnBvKBWZ18LLPbuHYs9-IRSUZr0rgEJUUP7SxMQuhn2tg6xvh2cOJgbqVgWRU3G17KaXB5SRvMPxOm1gfpwSA3ARO_otjU/s1600/IMG_1277.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCoCU_fA-UbV2tXVYFX8YFa-BSdkrlQO_athIODPimNsTP5jnBvKBWZ18LLPbuHYs9-IRSUZr0rgEJUUP7SxMQuhn2tg6xvh2cOJgbqVgWRU3G17KaXB5SRvMPxOm1gfpwSA3ARO_otjU/s1600/IMG_1277.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First day of the October is the first day to drink Pumpkin Spice Lattes - JD is pumped</td></tr>
</tbody></table>
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">Neurology</span></u></i></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Big Updates:</span></b><span style="font-family: Arial;">
JD’s EEG looks normal – YAY! This is great news. However, he is continuing to
blink and sometimes jerk so we are meeting with the head of neurology to
discuss possibilities. It does not seem to bother him and his oxygen levels do
not change which is a good sign. More to come after our appointment.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ9sMiRn3LRmeYoyycJvPFRxxnabwpIeOo59_vqi96_jXEAMuOHUokd0xko1gcm7hhGdoXtFtDOxEzIBaDlK_7Xn8-amlNVaxfGxujYqDRnf7puElotkIZ5y8ddeZcKpHEB21Edrlal5U/s1600/IMG_1263.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ9sMiRn3LRmeYoyycJvPFRxxnabwpIeOo59_vqi96_jXEAMuOHUokd0xko1gcm7hhGdoXtFtDOxEzIBaDlK_7Xn8-amlNVaxfGxujYqDRnf7puElotkIZ5y8ddeZcKpHEB21Edrlal5U/s1600/IMG_1263.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Worst part of an EEG - the amount of time it takes to put on the 27 electrodes </td></tr>
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<i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">GTube</span></u></i></div>
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<span style="font-family: Arial;">Every 3 – 6 months the
MIC-KEY Button for JD’s GTube will need to be changed (more info on MIC-KEY in <a href="http://growingupgawel.blogspot.com/p/medical-jargon.html" target="_blank"><i style="mso-bidi-font-style: normal;">Medical Jargon</i></a>). This is something we
were told we could do at home but the first change is always done at the
hospital. In all honesty I was freaked out at the thought of changing JD’s
GTube at home. The surgeon said it is extremely easy and we will get sick of
driving to the hospital each time it needs to be changed (oh if he only knew
how often we are at the hospital). </span></div>
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<span style="font-family: Arial;">On Monday, 10/8 when we went
in for JD’s MIC-KEY change I was prepared for a very detailed and very precise
procedure. The actual change took a total of 15 seconds – seriously, opening
the box took longer. Turns out the doctors were right it is super easy. If we
were able to shove an OG Tube down his throat then this will be cake. I made
another appointment just in case but pretty sure we can add this to our medical
resume. </span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Best News</span></b><span style="font-family: Arial;">:
After the GTube change JD seems to be much more comfortable. The MIC-KEY was
slightly shorter/smaller than the previous one and does not move around as
much. Crazy awesome. JD rarely “crunchies” during or after a feed anymore and
his reflux seems so much better. It could be a host of factors – he is bigger,
he is stronger, he has great therapies – but for some reason he is more
comfortable. Our goal is to keep as comfortable as we can throughout life so
check this one of the list. </span></div>
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<i style="mso-bidi-font-style: normal;"><u><span style="font-family: Arial;">6 Months Later . . .</span></u></i></div>
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<span style="font-family: Arial;">Receiving our
Wolf-Hirschhorn diagnosis opened up a world of scary possibilities for our
little James Douglas. Before he was born we had no idea what to expect from our little
man. However, now that we have spent 6 months falling in love with him we expect
everything from him. </span></div>
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<span style="font-family: Arial;">6 months ago I would never
have imagined we would be here . . . in a very happy place with a healthy boy.
Doom and gloom was all I could think about before JD was born but the moment we
heard that first cry I knew this kid was here to fight. I do believe sometimes the
best gifts are the ones you don’t even know you want. JD is the gift we did not
ask for but he has filled our hearts with such joy and love that looking back I
wish I had the foresight to put him on our wish list.</span></div>
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<span style="font-family: Arial;">The next six months will be
important for JD’s future but I know he will continue to get stronger everyday
and continue to bring so much joy to everyone that meets him.</span><br />
<br />
<span style="font-family: Arial;">Look how far we have come . . . </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEI2n50VCUrLgdv2Ip91yOZ_hma3-_kIzveEX6Px_nHHi_wYHY9xJQR13ysqzFPZEzm2LNYh4__6H6Z29hkj_rUMmIP7nCaNZ640cg5i-Z-_UCUiMClV2Pis8B4lU-8Ew41F3OccUKhfg/s1600/IMG_0198.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEI2n50VCUrLgdv2Ip91yOZ_hma3-_kIzveEX6Px_nHHi_wYHY9xJQR13ysqzFPZEzm2LNYh4__6H6Z29hkj_rUMmIP7nCaNZ640cg5i-Z-_UCUiMClV2Pis8B4lU-8Ew41F3OccUKhfg/s1600/IMG_0198.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">3 hours old</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMcnC1Qh9Bn1pEF9NKQyK84IDLJsgWOWMR1s5Xz1jJFzamCGfmM3Ttr4YOAuljQoVmKNQfHVkbqsMoDYYeCU3ov6WdhC5qp95JKHomR7VnN4iDhVcnAdxNkLtUXrMhyiSX_zgE4PL4AfM/s1600/IMG_9974.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMcnC1Qh9Bn1pEF9NKQyK84IDLJsgWOWMR1s5Xz1jJFzamCGfmM3Ttr4YOAuljQoVmKNQfHVkbqsMoDYYeCU3ov6WdhC5qp95JKHomR7VnN4iDhVcnAdxNkLtUXrMhyiSX_zgE4PL4AfM/s1600/IMG_9974.JPG" width="400" /> </a></td><td style="text-align: center;"></td><td style="text-align: center;"></td></tr>
<tr><td class="tr-caption" style="text-align: center;">24 hours old</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9xx05WOXpw47IgQKylkocAK8WJm1lBREpBqtO_UFqBj7w8mrN-WR9oAsCdxYTBK3VifK4I3FG2B9s7Cjy6iwNu2mlM4QJyUhfjTwotYY_2qepY2YsEQz7PHLOrwmMboTckKuEsWCE6aU/s1600/IMG_2441.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9xx05WOXpw47IgQKylkocAK8WJm1lBREpBqtO_UFqBj7w8mrN-WR9oAsCdxYTBK3VifK4I3FG2B9s7Cjy6iwNu2mlM4QJyUhfjTwotYY_2qepY2YsEQz7PHLOrwmMboTckKuEsWCE6aU/s1600/IMG_2441.JPG" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">6 months old</td></tr>
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Jennhttp://www.blogger.com/profile/05412227092337035406noreply@blogger.com3