It is hard to believe that it's been almost 4 years since Peyton's surgery for his craniosynostosis. I had never heard of this before Peyton was diagnosed with it, or should I say - I, along with my friend Angela, diagnosed him with it

I am not one to over-react especially with medical conditions, but I believe that when you know something isn't right - stick with it, do your research and if you are proven wrong - even better, but I'd rather been proven wrong than to have been right and it not been taken care of in the appropriate time frame.

What is Craniosynostosis? In an infant, the skull is not a solid piece of bone, but several bony plates separated by fibrous sutures. These sutures allow room for growth as an infant develops, and will eventually fuse to form a solid skull. Craniosynostosis is a condition in which one or more of these sutures fuse prematurely, causing restricted skull and brain growth. The result is an abnormally shaped head, or in severe cases, increased pressure on the brain. It is often sporadic with unknown cause, but can sometimes be linked a genetic syndrome. A physician’s examination as well as X-rays and/or a CT scan are required in order to properly diagnose craniosynostosis.

There are different types of craniosynostosis and Peyton's type is:

Sagittal synostosis (scaphocephaly). Premature fusion of the suture at the top of the head (sagittal suture) forces the head to grow long and narrow, rather than wide. The most common type of craniosynostosis, scaphocephaly is more common in boys.

Peyton had his surgery on 1/31/05 and he did remarkable.

This is a copy of an e-mail that I sent out after he came home:

Peyton is doing very well. His surgery was supposed to last 4-5 hours and they got done in 3 1/2 hours, so I was quite pleased with that and he got to come home a day earlier than what we expected. He has been very clingy which is totally expected since he isn't feeling well. He was getting pretty irritated yesterday before we went home. This guy came in to measure his head for his helmet and then the nurse was taking out his last IVs and he was not pleased. I think at that point he was tired of being messed with and he let us all know it.

Everyone else is doing well. I'm just trying to get caught up on my sleep. I did get to sleep in the hospital, but not as well as at home. Peyton did pretty good last night, he only woke up once. I think his pain medicine had worn off, and we had slept through his dose, so we got caught up on that and once it kicked in he went back to sleep for the night.

I just want to say thank you to everyone who was praying for him. I am positive that is why his surgery went as well as it did and he got to come home as early as he did. We appreciate every one's thoughts and prayers.

Here is a little collage of pictures that I took of Peyton - the first photo is at 6 a.m. on 1/31 before we headed to the hospital and through our stay there until he arrived home.

I was thinking about his surgery yesterday since the anniversary is this week and we went to Children's Mercy yesterday - it was snowing when we headed down there yesterday and it was snowing the morning of 1/31/05! It seems like whenever I go there it is snowing, well maybe not every time. I took him down yesterday for an MRI and he did amazing. They had to sedate him for the test, since it's about 45 minutes long - they gave him an IV and while he was quite bothered about what they were doing, he never cried. I was very proud of him. The nurse promised him that she would remove it as soon as he woke up and the first thing he said to her when he woke up was "take this off of me now". She got quite a kick out of that.

The MRI was ordered to ensure that his sleep apnea was indeed obstructive sleep apnea and just to make sure that nothing else is going on. I am positive that everything is okay though!

I did receive an e-mail this evening from Megan and it seems as if Marleigh and Natalie are still doing good. They both had an echocardiogram to make sure their PDA's were closed and thankfully they were. So far, so good...

Take Care...

Dawn