So I know I have been MIA with Ian and his updates. The truth is, he is still taking about 85% of his calories by mouth, and eating 4 meals a day. However, he is retching everyday again and is retching about the same as pre-program. The retching seems to be for multiple reasons, most of which we don't know.
We have been talking with the CHoR clinic about food intake, lower GI issues, stomach pain, stooling, medications, mucus, illnesses, fluid consumption, behavioral components, sensory issues, oral volume intake, and many other issues in order to try and find a solution/explanation.
Tom and I are very discouraged. We are so proud of Ian and very happy with his courage, progress, and eating skills...... but are disheartened by the return of the retching. The episodes are beginning to bother him. Last night, after dinner, Ian had a episode a few minutes long with four vomits. At the end, he leaned over to Tom, gave him a hug, and said "I'm sorry daddy."
The tears streamed from our eyes. We are talking with good people and looking for some options. But, that is why no one has heard from us about him. There is so much up-and-down right now and Tom and I are having a hard enough time keeping up ourselves. I write daily notes for Ian that have become weekly journals almost. We can give TONS of information to the clinic for educated decisions. I cannot imagine where we would be without those daily notes.
Thank you to everyone for the support and understanding. We are trying to keep our spirits us and remain hopeful that someday soon, Ian's retching can finally be gone.