One of the reasons why we are walking for Children's Hospital

I first want to start by saying, "THANKS" to all of you who donated money for our walk this Saturday.

Most of you know (only because my blog has been my outlet) that my younger set of twins have craniosynostosis. Carson has sagital synostosis and Cooper has sagital & metopic synostosis.

A few of you have asked what cranio is and how it affects my children. Craniosynostosis is premature closure of the skull bones. They fuse before the brain has a chance to grow. Most children with cranio end up having something called a " cranio vault repair". The surgeons go in and surgically "make room" so the brain has room to grow normally.

Sagital synostosis is the fusion on the bones that run down the middle of the skull. With that fused, your brain can only push the bones forward and backwards, not side to side. This is what sagital synostosis looks like before surgery. The Doctors call them "toaster heads" because they look like a toaster.

This is what it looks like 4 days after surgery.

The surgeons perform a zig zag incision, they take out parts of the skull, (they widen it) and they place it back together with plates and screws.

After 1 year, areas of bone that had been removed should close. Except if you are my kids.

Here is what the CT scan of Carson's skull looks like.

All the dark grey spots are open areas.

Here's Cooper's.
This picture shows everything GREAT! You can see the fused suture down the middle of his head, and you can see the areas they took out and still have not closed
This picture you can see where his plates and screws are along the sides of his head.

And this picture shows the lumpy ridges in his forehead that Dr. Jensen is concerned about.

So, This is why we are fundraising and walking for children's hospital. As you can see, my kids still have a ways to go. I need to know that that they are getting the BEST possible care out there.


Michelle said...

Oh my god, Cindy. I know this story already, but seeing it in pictures ... gives me goosebumps. WOW.

I hope everyone has a great time on Saturday - I'll be thinking of you!

Lost A Sock said...

Those are some incredible pictures. At first when I saw the one from the back of his head, I could see through to his little teeth (how cute!) But seeing the front? Very scary.

I'll be thinking of you all this weekend as you walk your socks off!!

Meghan said...

Maybe we'll see you on Saturday, Lisa, Jeff and I will be walking!!

my4kids said...

Have a great day on Saturday! Those pictures are incredible.

nailgirl said...

Wow! Is all I can say! I hope that you raise loads of cash! Thanx for explaining I understand now!

Sara Eaton said...

I found your website playing around on the computer again... I too try to research as much as possible regarding Chiari. My now 19 month old daughter was decompressed in January at 17 months old. We live in Phoenix, Arizona and it has been a very long road. And we have an even longer road ahead of us. I find myself glued to my computer when I am frustrated with worry! My daugher doesn't walk, doesn't talk and is currently tube fed only at this time. Well, I just wanted to stop in and say hello. I hope your fundraiser was successful! We will keep your family in our prayers!

Sara & Mylee Grace