I took Kylie to two follow-up appointments yesterday (GI and surgery). I'd have to say that since she was hospitalized for 24 hours on December 26, we have seen some nice progress. Doctors seem to be quite pleased. We still do not know exactly what happened in December. However, in December and prior to December, she was on a couple of different medications for small intestinal bacterial overgrowth. Docs think it's possible that one of the meds may have caused the episode back in December.
It seems to be taking lots of time (as in months) on the milk-free diet for Kylie's distension to go down. She truly seems to be doing better and better. I didn't expect results to take months but as dilated as her small intestine was, it is very possible that this explains this long process.
Kylie's tummy is always very flat in the morning and is most distended and filled with gas by evening. Her appetite also follows this in that her best meal is breakfast and her worst meal is supper.
The GI doctor really thinks we still need to go down to KC for upper motility testing. The surgery doctor does not think this is necessary. Kaycee and I are thinking along the same lines as the surgery doc. We really do not want to put Kylie through this because we don't think that we would gain much through this testing. I requested for the surgery doc to talk to GI to determine if this is truly necessary. So, I hope to hear something soon.
Kylie's diet is going really well. She is such a trooper and seriously never complains about not being able to have certain things. Last night for supper I wanted to try a new recipe from my sister: a cheesy soup. Obviously it was one that Kylie wasn't able to have, so I made her some chicken noodle soup (sadly, from a can) and added some bacon to make it a little more like the rest of ours. As we're eating, she says "Mom, this is great. Can we have this again tomorrow night?" I almost think that it is to her advantage that we've had to start this diet so young...she just doesn't really even know or care about the yummy foods she's missing out on. She does occasionally say she misses drinking milk or eating cheese, but hardly ever. Now, I really do try to feed the entire family the same dairy-free dish the majority of the time. I really make the effort to not make her feel different from everyone else.
Overall, Kaycee and I are really encouraged with how things are moving along. We will just keep pressing forward with Kylie's diet in hopes that her distension will continue to improve over time.
