We've finished the round of tests that were scheduled from our second opinion appointment. Although I posted earlier that the gastric emptying test came back normal (based on what I read), the doctor felt that it still wasn't fast enough to not put Jonathan on medication. Our second study showed that Jonathan is still having some reflux issues as well.
Other then those two things, everything else came back normal. We've tested for pretty much everything from Celiac to Crohn's to malabsorption. Everything also looks good structurally speaking and there wasn't a blockage, so we're quickly coming to the end of things we can address with his GI system. Obviously, we've done all the standard blood and lab work over the past few months that would show something else was going on. The only study we haven't done yet is a colonoscopy (with biopsy), which we may look at doing in the coming months if he still isn't gaining enough weight.
For now we are going to give him medication that should help with reflux and a medication that will hopefully decrease the time his stomach takes to empty (Bethanechol). Also, we're starting the feeding clinic tomorrow. There is a slight chance that Jonathan is one of those people where liquid actually takes longer to empty then solid food. If we can get him to start eating on his own while on the medication we may see some good gains in weight.
I can see a situation where there is nothing wrong with him other then reflux and a slow stomach. The combination of being full and associating eating with unpleasantness could explain why a genetic predisposed small person is even smaller. He's basically the same height as Julia was at this age but he's a lot lighter. We're trying to avoid a permanent surgery on his stomach and hope that we can just teach him how to eat on his own.
The point is we're getting close to where we think we've done enough testing to figure out what is and isn't going on. Getting him to eat on his own and managing his caloric intake might be all we do over the next few months.