Tuesday, April 20, 2010
Reagan slept a little better last night. Of course, most of the time it was in our bed, but we'll take any improvement over the night before! She still woke, but not as often. I'm hoping soon she'll get back to sleeping through the night in her own bed...we could all use the rest. She was still nauseous today but definitely less than yesterday. She had two big throw ups, one first thing in the morning and one tonight when I tried to brush her teeth. She coughed and gagged at times throughout the day but she managed to keep it down. We went ahead and resumed normal activities today. She had school (1hr of homebound "teaching"), vision therapy, and physical therapy all from home. She tolerated it really well. Her PT mentioned how impressed she was today with her head control. Too bad when we put her in her stander she was already tired out and not holding her head very well. She actually only made it about 20min in the stander...we had to take her out when gravity worked it's magic leading to the second dirty diaper in under an hour. Then this afternoon I was talking with her nurse about what Reagan's seizures used to look like (because she was recording medicines, one of which is Diastat, the rescue seizure med). I showed her the video from September (the day she started Banzel). It's still disturbing for me to watch. But oh what a blessing for those seizures to be gone only a few short months later...after 2+ years without any relief whatsoever. Meanwhile, Reagan was laying on the floor with her toy and something made me go check her out. She was doing the weird eye thing again. We've only seen her do it once before and it was about a week and a half ago. Her eyes widen and then go back to normal, widen and then back to normal. Over and over again. From the time I noticed it to the time it stopped was about a minute. During that time she was sort of looking down. I kept trying to snap her out of it, but she was in the zone. Definitely looks seizureish. I'm hoping maybe it's just another neurological quirk, like the chorea, that looks seizureish but really isn't. That's my hope (that and to never see it again). Please say some prayers for her!!