Today's Appointments

Bryce and I just got back from this week's trip to Phoenix. For tax purposes, I figured out last night how many miles we drove last year just for medical appointments. John and I were shocked. It was 3742 miles, and I know that there were a few appointments that I didn't have down!!! Amazing!

Anyway, today we first went to PCH for a swallow study and then to the wheelchair clinic to get his chair adjusted. Things went well overall I guess. He still seems to be swallowing fine...aka not aspirating which is wonderful. The therapist did say though that his choking issues are coming from his decreasing oral motor abilities. He is no longer able to suck and is really not able to chew or get the food moved around in his mouth. Most of what goes into his mouth, comes right back out and he is drooling much more then in the past. The gagging is coming from the food beginning to go down his throat and as a natural response his tongue moving up to close his airway. As the consistencies got thicker, he had a much more difficult time. She said that due to his decreasing oral motor abilities, he needs to get all of his nutrition though his G-tube. He can still occasionally eat soft foods that don't really need to be chewed just for the pleasure of eating. Any liquids that I give him by mouth will have to be with a spoon. He will continue to need to be monitored to watch for aspiration. If that does begin to happen he will no longer be able to have anything by mouth. It's just so sad that one more pleasure of this life is being taken from him by this awful disease. It is so hard for me to not get down or even angry as I watch this continue to happen. However, I sure am glad that we live in a day where there is an alternative way of getting life sustaining nutrition into our little boy!

At the wheelchair clinic they added a crotch strap which is really two straps that go over his thighs so that he will no longer slide forward in his chair. With the added support he seems to be able to move around a little bit better while in his chair. He looks much more comfortable as well and it should help to keep his hips and spine in alignment. There are so many pieces to buckle on that chair now, that the therapist actually suggested that we color code them with nail polish to help with the confusion! =) I may just do that!

If all goes as planned, we are now appointment free until April first when we see the neurologist!