Followup

Well, we're supposed to start Speech Therapy again next week. Why the two week break? Because we didn't follow up with them and assumed they would call us with our schedule, which we should know better than that. Anyway, each week we'll have 2 therapy sessions and get one "meal" with one of the psychologists from the program, so that will be good because we'll have someone to ask our followup questions of. We feel like we kinda got dumped after the program ended. They gave us some discharge instructions, but not really a plan. That's the weird thing we've learned about all this and seeing so many docs and therapists--no one's in charge. So you have to do it yourself.

The new medication doesn't seem to be doing anything (nor the new $$$ formula). There were 3 medication options that the new GI doctor listed in order of least side effects to most. This one is the least. It's (erythromycin ethyl succinate) a teeny tiny dose of an antibiotic that as a side effect in some patients makes their tummies squeeze more, which is what we were hoping for. So in a sense, the fact that it had no side effects is bad because the cure we wanted was actually a side effect, if that makes any sense. The other two meds available have more potentially serious side effects, with the third one not being worth trying, in my mind. But I'm waiting on the doctor to call us back.

Weight update, Sophie is 18lb 12oz. She's gained 4oz since we saw the GI doc 3 weeks ago. This isn't great, but it's something. At least she's not losing weight.

Overall, the meals are going well. We've been able to maintain the routine. They told us that we might see regressions in the first 2-3 weeks, but so tomorrow is 2 weeks and things are going well. Sometimes she does better about taking more food or drink, and some stuff she seems to not like, and some stuff she just can't handle. Thick, gooey, sticky foods don't work well, we're learning. And sometimes we see it still where we think she just gets filled to the brim. Unfortunately, 2 of the 4 meals a day seem to have some kind of spit up, so she's not getting as many calories as we're shooting for. If we could keep it all down, we'd be close.

Here's a video of Sophie playing today, if you want to kill 5 mins at work. She's gotten waving down and her new thing is the "I don't know/what happened?/where'd it go?" hands at her shoulders gesture. Also, like all little kids, she's fascinated by phones, as you'll see.