As of our last meeting with Ben's surgeon Dr. Mace, we have felt uncertain about Ben's future head shape. The large opening that was cut during Ben's surgery has already closed, and the doctor has little hope in his head shape changing much from what it looks like right now. I had mentioned helmet therapy or another surgery, asking if that would be a possibility. Dr. Mace wanted to wait another eight weeks to determine what should happen next. Josh and I weren't comfortable with waiting that long, so I made some new connections on a craniosynostosis message board, Cranio Kids. Through that website I was referred to Dr. Matthew Smyth. I emailed Dr. Smyth and have posted our correspondence below.
His response was so warm and friendly, that I would have really liked to have worked with him. However, because he is out of network and I have a horrible HMO, it isn't the most realistic option. We took this information and asked Dr. Mace again about helmet therapy, and have been referred to an orthotics clinic to have Ben fitted for a helmet.
In the picture on the top of the page Ben is in another one of my brother's outfits from when he was a baby.