Well, the good news is Caitlin regained the weight she had lost over the first 6 months of 2014, so she’s back to her pre-surgery weight.
The bad news is there’s no apparent explanation for her vomiting beyond “Aicardi Syndrome.” Her Upper Gastrointestinal study came back clean (nothing is out of place physically, and stomach contents are moving around in the system appropriately). She may have some mild reflux, but not anything that’s causing damage, and there’s no real evidence of it.
Any next step we could take, like an endoscopy, would be invasive, painful, need anesthesia, and possibly make things worse. The vomiting has been slowing somewhat, in the sense that it has been mostly one-and-done for the past 2 months and not a rolling day of barf on each occasion. So, the GI doctor was of the opinion that we were experiencing some sort of weird side effect from her body readjusting after a major surgery, which seems to slowly be getting better, and that living with it is the best course of action.
Given that Caitlin had a small seizure while she was on the exam table, I suspect that made him firmer in his commitment to not doing anything more invasive. He seemed very much in the “she has other fish to fry” mode.
So, we’re having the kinds of complicated feelings that make sense when a doctor tells you there’s not much more that they can do, coupled with the realization that the vast majority of our decision-making these days is about quality of life above everything else. Poor Caitlin throwing up every few days is just going to be part of our lives now. We just wish there was something we could do for her.