Friday, February 20, 2009

Craniosynostosis Graduation Day!

For those of you that may be new readers to our blog I thought I'd do a quick recap on our son's adventures over the past 6 months! In August Jackson had a limited cranial vault... in shorter easier to understand terms, almost 50% of his skull was removed!

Jack at 3 mos old...
Jack at 10 mos. old...We found out a few months prior to his surgery that one of Jackson's sutures in his head had prematurely fused shut...Craniosynostosis. Pretty freaky! After trying for Jackson for about 8 years and finally getting our miracle, this was a pretty surreal revelation for us, and pretty scary one too. The only answer for him was surgery and so we set forth down our crazy Cranio journey...
What an adventure... there is nothing harder than handing your 4 month old over to a team of surgeons so that they can make a hole in his head on purpose! But we did and they loved and took care of him and they are our heroes!

Our Little Hero...
Our Little Hero's Hero...
This is Dr. Genecov, Jack's Pediatric Plastic SurgeonAlong the road we have had the honor and joy to join other families on their cranio roller coaster rides. Feel free to peruse the blog to read some of their stories and see more picks of all of Jack's Cranio Buds! Craniosynostosis effects about one in every 2000 babies. Many come to Medical City Dallas, as this is where two of the best surgeons in the world are located.

The type of surgery that Jackson had was a somewhat less invasive procedure than what we cold have chosen, but left him with a bit of an uncertain growing period. Frist, a good portion of this skull was removed and second, his head had to learn a new way to grow... so Jackson was fitted for a cranial band (or helmet).

It's been a good 5 months now since I've seen my baby's head for more than about an hour a day. But yesterday Jackson received his offical discharge! He is Helmet Free!!! His head is beautifully round (a little bumpy, but who's isn't). I feel like he's had his first Graduation Day!! I have no doubt that our journey with craniosynostosis will never be completely over... if anything we'll be able to share our expereinces with others, but for now we celebrate!!

What a great God we have! He has brought our family and my little man through so much!! Keep praying for him as he grows. In some ways the real test starts now. His little noggin' is on its own from here on out. And pray for me too that I don't try to hard to catch him every time he falls! I know it's impossible for him to never hit his head, but wow it's scary now to have a toddler with such an expensive head!

Jack's Last Cranial Scan (for a good long while anyway!)...
Graduation Day Pics!!


    We will miss your blue little helmet, but we are so excited that you are "dehelmeted". God is so good to us and we know he will keep using you and Mommy and Daddy to help other kids, just like you have been doing since your surgery. We love your round little head and your stinky feet! Nana and Gramps

  2. yep, i cried through this post. haha. pretty much just blubbered all over the keyboard. i love your little guy. So thankful for his protection and continuing to pray for healthy growth. What a champ!

  3. hey...i read that you are collecting books for Jack and mom and grandma found a few and wanted to ask if you had them already. Jack the Builder, Jack the Lepercon, and Im not sure of the last ones name but it is something like Jack from the city or suburbs. Anyways just thought I would ask. And congratulations on the helmet! Love yall

  4. YAHOO! Wasn't it fun to eat that choco chip cookie for the occasion? AND get your first hair cut! Your story is such an amazing testimony of the goodness and kindness of God. Our God is faithful in working things out for the good of those who love Him.

  5. Congrats little man! You look awesome!