Maria had her latest barium swallow test last Thursday. I’d re-scheduled it twice already and of course Maria had a pretty rough night before and morning before the test. I thought about cancelling again, but figured we may as well get it over with. She did ok on the honey consistency, and on next thicker consistency, can’t recall what they called it, but I’d never heard it before–honey thick or honey paste?, then she dipped a cheeto(sp?)-like snack that Maria’s been doing well with in pudding consistency; Maria swallowed the pudding, then while chewing on the snack, she silently aspirated the pudding, so they stopped the test. The speech therapist doing the test went over it with us, which was very nice of her. Before she had a chance to say much else, I said “Don’t even talk to us about a G-tube. I’m not willing to consider that right now. We’re on the list for the Vital Stim (where they stimulate her throat muscles using tiny painless electric shocks), and we need to complete that before considering a G-tube.” She said ok, but if Maria’s voice gets rough after eating or drinking or if she spikes a fever for no reason, then call your doctor immediately. Yea, we’ll get right on that.
I did go home and thicken her depakene (one of her seizure medicines), and it is much easier to give it to her that way. Although Maria’s been x-rayed and scoped and they’ve found no evidence of aspiration, nor does she spike fevers very often, she does breathe rough a lot. Yes it bothers us. No we don’t know what to do about it.
Friday was our favorite doctor’s appt — I took Maria to the dentist. I told him he’s our favorite appt because so far he hasn’t found anything wrong. No cavities, no rare diseases, syndromes, or other nonsense. (Now I just have to get myself in to see one one of these days…)
I’m not super thrilled with the OT. She pushes Maria too hard, doesn’t understand cortical visual impairment at all, and is more critical than the other therapists. I’m going to get her some CVI info. Today I suggested letting Maria lay down and she did better. I was out of the room a lot and when I came in, Maria was stiff, looked mad, and wasn’t doing as she was being “asked” to do. Not quite sure what to do about it. She’s not too good on taking hints, but I’m probably not being direct enough. She doesn’t appear to understand how hard it is for Maria to maintain an upright position and do the things she’s being asked to do…
Tomorrow’s Maria’s Christmas party at school. Although I finally got the cold that’s going around, I’m planning to go, as is Uncle Andy and Sue (Manolis has to work).