We have a plan :)

We absolutely loved Dr. Rosen. It was the first time I felt someone understood exactly what I was talking about and shared the exact same concerns and actually had some ideas of what to do to help. They did see some dismotility of the esophagus on the upper GI study. She want to do an actual esophageal motility test to get a better idea of what's going on with that. That is scheduled for Monday afternoon. It is mainly for information, there isn't any medicine that can be used for this, and the only other option is undoing the nissen, which really isn't an option for him. Also, she is going do bloodwork to check his thyroid function. Her main concern is getting Sam to grow, not only in height, but to gain weight. She completely agrees that he should be tolerating much more volume in his stomach. She thinks the core problem is with his stomach. She's thinking there is some nerve damage that is causing the issues. So there are a couple of things we are going to try. She is starting him on some medicine, periactin, that should increase his appetite and help his stomach relax. We are also going to start tubing actual foods in his grubs along with his formula. We will start by adding a little stage 2 baby food meats in with his formula during his regular schedule. Over time the goal is to increase this amount and eventually we would essentially put what we would be eating into a blender and tube it in him. Also hoping that over time his stomach nerves would begin to learn to feel hungry and full. If these things don't work out we have a couple other options in our back pocket. We have an appt with the nutritionalist on Tuesday afternoon to learn how to advance his tubed food feeds over time. So after tuesday, we will be heading home!!
We plan to enjoy our time here in Boston in the meantime. We have never done anything while we have been here except be at the hospital. We have tickets to the red sox game tomorrow night, plan on visiting some museums, and also seeing some friends in our free time this weekend.
Please be in prayer about our next step in this feeding issue. I am very hopeful in Sam tolerating this new diet he will be on, and I am hopeful this will be the path to our long term success of him gaining weight and tolerating food and volume in his stomach.
Thank you for your prayers and for loving our boy. I will post new pics as I get them :)