While outsiders might think that we aren't doing much, I think Noah has made amazing progress. We are now up to 20 minute sessions in the chair in the therapy room, with only a few requests to get down. He has a very hard time with transition and they have found that he does better with longer breaks in between and longer session times. Right now they are working on putting a spoon, cup, and bottle with a straw to his mouth. A typical session goes like this: Set the timer, start a movie, play with toys. Every minute, the movie goes off, toys are pushed away and one of the three things is put to his lips for a count of three. Then the movie goes back on and the toys come back. All the while they are introducing touch and physical interaction with him. He is very slowly getting to the point where he is allowing the water and spoon into his mouth. They have decided not to transition me out of the room just yet due to his high anxiety issues. He is getting very comfortable with the team and will even let them hold him and get him up and down from the chair. This is HUGE for Noah! They are still working on feeding tube changes and we are moving up on the formula transition. It might take another week to where he is 100% on the specialized formula. I know that these therapy sessions sound so simple and generic, but each move they make has a purpose. I can totally see how the key to the success of this program is repetition, reward, and reintroduction. They have noticed that he has a need for things to be the same and change and transition is very difficult for him. They said is very hypersensitive and that this is probably mainly due to his long medical history and all that he has had to endure. There is still the big issue of his internal gut issues. The GI dr that was formally involved in the program has relocated to New Orleans. He has a reputation of being one of the best pediatric GI dr's around. We may, in the future, need to consult with him, although the director of the program is also very fond of the team in Cincinnati, so that might be a closer option for us.
We are just so very blessed to be here. I love the team of therapists and I strongly believe in this program. Their beliefs and philosophies on feeding issues are truly fascinating!
We are heading home tonight after the afternoon sessions! Yay! It will be a quick weekend, but I am so ready! I can't wait to see Zane and Brian and go Trick-Or-Treating with the boys. Not to mention, sleep in my own bed!
Hope you all have a safe and Happy Halloween!
P.S. If you could, please keep little Jamie in your prayers. He is having a rough time after a very difficult CDH reherniation repair. It's so difficult to have your baby back in the hospital and on the vent after being home and thriving. Not to mention being seperated from your other child again as well. His mom is Amazing with a capital "A"!