Alex and I are in Houston for our quickest visit ever! We came in yesterday afternoon. This morning we met with Alex's surgeon. Alex's Jtube (the one we feed through) is not very user friendly! It leaks all the time and the extension (part we put into the button to feed) pops out if we don't tape it. So his stomach is taped 24/7. There are very few tubes that can be used in the intestines. So we were meeting with the surgeon to decide if we could change it. We can, but it has to be done under anesthesia. So we will change it in November when he is already going under for a number of other procedures.​
After our appointment we spent a few hours with Alex's girls (aka the nurses and child life). He was thrilled to see everyone and I think the feeling was mutual!
Tomorrow we see Dr. Koenig and then GI. We will get on the road as soon as our appointment​s are over and head home.
I will update on thoser appointment​s from home.
Ali