We spent about an hour and a half in the genetics cetnter. It seems we have done pretty well at getting Caden to all the specialists that they would normally recommend. Their observations of Caden left them impressed with his growth and cognative development. Their primary concern, once the heart and scoliosis issues are ironed out, would be speech development and swallowing. They were encouraged to hear that we had already looked into the feeding and swallowing center in NJ. They were glad to see us seeking out the best care for each diagnosis.
We are currently in the Ortho-Peds waiting area. This is the big appointment for this trip. Genetics has given me an idea of what to say and what I might expect to hear in reponse. We are being encouraged to ask about options other than “the best” option for assessing the spin since the pacemaker/MRI thing is so complex. We might expect the orthopedics folks here to recommend waiting on the heart stuff to get done first.
We will see. I will update later.
Oh…we missed out on Ronald Mc House. They did help use save about $50 on a hotel room.