Not too much has been going on with Kai lately. Right now we have decided to go to physical therapy just once a month, due to cost and there isn't much they can do right now that can't be done at home. The key is actually doing it! I hate causing my sweet boy pain. We finally got Kai a much needed mattress. This seems to have helped his back pain.
I guess I didn't make much sense when I told Jeremy what Dr. Medne said. Because he called and spoke with her last week. She said that they are especially interested in Kai's case because his mutation occurred on a different gene than they have seen before. On top of this his presentation is much different than the other cases. So we will see what happens. Our trip to Philly in January should prove to be very interesting.