A Beautiful and Interesting Adventure; Our journey with Craniosynostosis.

Yay! Today, May 20th marks one week since Rylen had surgery to correct her skull. I wanted to write this for us to remember, for other cranio families who want to know what to expect and for RyK if she wants to know what her surgery was like. On Tuesday May 13th  we arrived at Oakland Kaiser at 6am. We were checked in and sent to pre-op. There they gave her some "happy juice" and daddy turned into the funniest guy around. We handed her off to a  nurse about 8am. Then we waited for our first phone call. At 10:20 her nurse called to tell us they had made the first cut, at 12:45 he called again to say she was doing well and they would begin to close. At 2:20 he called and told us to be waiting in the lobby for the surgeons to arrive. Finally around 3:00pm Dr. Pang and Dr. Zovickian came walking towards us. Everything went well and we could go to the PICU and see her! When we walked in we could hear her crying, we knew she woke up fighting mad. She was turning her self a

How did we discover that our baby has Sagittal Craniosynostosis?  Two Thursday's ago we took Ry to get an  MRI because she has a y shaped gluetal cleft (which means her butt crack goes into a Y shape instead of an I shape) She also currently has a flat bruise like hemangioma about the size of a nickel on her butt, at the base of her spine area.  Both of those things can be an indicator that there could be a tethered spinal cord or another spinal issue. She has other hemangiomas but the pediatrician was only concerned if they appear in specific areas, and one of those to be concerned about is the area around the spinal cord. So they suggested we get an MRI to rule out any spinal cord issue. After her MRI we went to meet with a pediatric neurology doctor. She told us her MRI results were negative! yay! Which means that she does not have any issues with her spinal cord. However at that appointment we learned a new word that unfortunately will be part of our life now. Crani