Just a quick update... Alex and I are doing well. We got to Houston on Sunday. The hotel medicaid had booked for us was DISGUSTING!!! I called Bruce first thing Monday morning and found a Hampton Inn with vacancy. We moved into the new hotel early monday morning and are much happier. Yesterday, Alex had a ph probe placed. It is a tube that goes through the nose down into the esophagus to measure reflux. The first few hours were really hard. Alex felt like he couldn't swallow and was really cranky and scared. After a nap he starting feeling better and did great the rest of the time. We had that removed today. Then we had his swallow study. I was a little disappointed. I had specifically asked that it be done with a "big boy cup" as that is when we have seen problems. They did it with a sippy cup and only watched 2 swallows. So there report is that everything is normal, but I am not sure that they watched enough and it wasn't with the right cup. I will discuss with Dr. Koenig and Dr. Benzick whether we should repeat it at some time or not.
We have 3 appts left all just dr's visits. Tomorrow, Alex and I are going to the water park to hang out in the lazy river. We are going to try and get together with some friends Thursday and then we head home Friday.
The hotel has a computer so I will try and update one more time.
Thanks for all the thoughts and prayers.