A Beautiful and Interesting Adventure; Our journey with Craniosynostosis.

It is post- op day 133! It's hard to believe its been 4 months (and 10 days to be exact) since Ryk's Cranio Surgery and she is doing great! We had our first post-op CT scan today and I am delighted to say everything looked good! Here is a look at pictures of her head and her skull! UPDATE : FOR MORE CT SCAN PICTURES CLICK HERE At RyK's Neuro appointment her doctor said that the soft spots that the neurosurgeons created during surgery have already begun to close. That made me a little nervous. However, she assured me that everything should be okay.  Just because they are closing already doesn't mean that Ry's head won't still have room for her brain to grow. That was the best news we could have received!!! She recommended that we come back in year to check- in and for them to feel her head.I also learned that her metopic suture had already closed by the time we had the first ct scan, at around 10 months old. If you look at the image there is no jagged line

Hello!  On Thursday August 27th I posted a survey on the Cranio Kids-Craniosynostosis Support Facebook page. I was so excited when I woke up the next morning to see over 250 people had participated. Because so many of you wanted to know the results, I filmed a video and posted it to Youtube . At the time I filmed the video I had around 350 responses, now  I have 503. I have decided to write down my "final results" of this survey in a blog post, as I will no longer be checking it for responses. I would like to apologize for my spelling or grammatical errors in that survey and for any future mistakes. *Please note that I created that survey in 20 minutes, I sat down and my computer and wrote down all the questions I could think of.* I was hoping that it would be able tell me something I didn't know about Craniosynostosis. Some of my findings were to be expected and some I was surprised by.   I have been collecting information and am planning on creating another, more detai