Craniosynostosis revisited

I've barely posted on this blog over the past couple of years. Although, a lot of people still read it. I think most of the people who read it come across it while searching, "craniosynostosis." This has always surprised me. I've decided it's time to do a quick update on Hazel for those who are curious. My daughter Hazel is 4. She's about to start pre-school and was born an identical twin. Hazel has Craniosynostosis. Hazel's twin sister passed away almost 3 years ago from a heart defect. Hazel had surgery when she was 2 months old in Kansas City. I loved her neurosurgeon there! Our one scare with Hazel happened after surgery. She was given her narcotics too quickly and in an infant that young it can cause, rigid chest, which it did. Twice! We thought she was going to die. It was awful. The surgery is very painful and we were only sent home with Tylenol. Hazel cried for nearly 24 hours after we got home. We took her to the ER and she was prescribed something stronger. After that we had about 10 months of helmets. Once those were gone, Hazel's life was totally normal. Hazel still has a very lumpy head. The helmets did not make her head perfect like I think many people expect. But she is a healthy and beautiful girl and we love her to bits!
















































Here are a few when she was younger.