Summary of Findings

Here is where we stand after all is said and done from our visit to Cincinnati Children's Hospital. All of the tests with the exception of the "subtle" finding in the manometry test came back normal.  This is really good news that almost everything came back normal.

From our follow up conversations with Dr. Kaul and his nurses, we are a little bit of a waiting mode over the next few months. We are waiting to see how he responds to the Botox and dilation procedure as this should tell us a lot of information.  What we think we've been dealing with is a sensory issue coupled with some complications from his small bowel not firing quite correctly.  Dr. Kaul also mentioned that Jonathan seemed to have a small stomach. I think this is partially due to him not eating large meals over the years to stretch it out and his small stature.

If the core issue is sensory, that he feels full when he really isn't, made worse by a smaller stomach and periodic misfiring of the muscles in his small intestine, then we should see some pretty good progress with his appetite and food intake from the Botox and dilation. This should give us confirmation of what we now suspect is going on.

We can also approach his treatment in the meantime under this assumption and do things like give him medicines that target those areas, feed him smaller and lower fat meals, etc.  The really good news is that although it is hard to diagnose and treat kids with these sensory issues, they typically improve over time and usually resolve themselves. All the lack of eating and vomiting when we fed him via his tube when he was younger (at rates and volumes he should have been able to tolerate physically) could just come down to the fact that he thought he was full or too full and needed to vomit.  We aren't even sure how he feels if it is a sensory issue.  I am just referring to it as full since that what he says, doesn't eat, and says nothing hurts.  It could be a completely different feeling that you and I experience when things are working normally.

Over the next several months we will be monitoring how much of his daily intake will come from him or come from us feeding him. We are already seeing good indications that he is making progress eating, and we know he is getting enough calories and using them properly, so his size is probably a non-issue at this point. He is going to be as big or small as he was always created to be.