Maria had her latest well check which ended up being more a post-hospital followup while we brought the pediatrician up to speed on the latest drama.
Maria’s been feeling crappy lately, though we aren’t sure why. Cathy thinks it’s from being around all those germ factories at school. I suspect that it’s side effects from the increasing dose of Trileptal. It’s probably both. She’s been pukey and gets bouts of crankiness where she is clearly uncomfortable. Her seizures tend to be less severe but certainly aren’t anywhere near zero yet.
She’s started doing the finger-down-the-throat thing again. Cathy met another mother at the last hydrocephalus conference and her son does the same thing. She said they finally figured out that he was doing it when he needed to burp. We’ve been trying to burp Maria when she does it and so far it seems to be helping. She tends to swallow air when she’s having a seizure so she’s been pretty burpy for a while.
I was thinking we should try teaching her the sign for “burp” so she can ask us for help rather than gagging herself. I can’t remember if I’ve mentioned it before, but I found a great online ASL browser for stuff like this. I have yet to find a word they don’t have.
Cathy is getting less freaked out about school, in part because the school seems to be adjusting to Maria’s needs. She’s still concerned about a few things, but it’s a learning curve on both sides. A particular concern is that she asked how Maria was drinking and the aid said, “She hasn’t been drinking much. We’re a little concerned about dehydration.” Um, and you were going to tell us that when??? If Cathy hadn’t asked we aren’t sure they would have mentioned it. Cathy’s going to start including a bottle in Maria’s backpack in addition to the sippy cup since it’s easier to get her to drink with that.
We continue to keep the cochlear implant in the back of our minds but the audiologist, as we’ve probably mentioned before, is terrible about follow up. She just doesn’t return phone messages or emails, which is a touch annoying. She is supposed to send us contact information on some national expert we can get more info from but hasn’t yet. Since the hearing aid thing dragged on for over a year without her returning a single message, we aren’t optimistic. Frankly, even though we know the possibility of an implant is important, we have enough on our plate right now. Cathy certainly has better things to do than keep nagging her.