Dr. Rehan called the next afternoon. The first thing out of her mouth was, "Trish, how are you doing?". She couldn't believe the diagnosis. They had sent a consult letter and preliminary CT results already that day. I thanked her for catching it - I had talked to another mom who went through 3 doctors before her daughter was finally diagnosed at 11 months. She told me that she wished she would have sent us sooner, but Adeline was only the second baby in all of her years as a pediatrician that actually had craniosynostosis. I told her about the battle we might have with the insurance company and she said she would call and send letters, she would do whatever she could to help. It made me feel grateful that Adeline had such a wonderful pediatrician, but also made me realize how rare this condition was. I didn't want to feel alone.
I joined craniokids.org, a online support group for those with loved ones who have craniosynostosis. So far the ladies I have met are amazing. I feel so much more confident now that I can share my feelings and concerns and questions with other moms that have gone through or are going through the same journey. I just can't wait to be "on the other side."