Wednesday, October 14, 2015

Super tense and startley

So today has been another super tense day for my girl. Her body is just SO rigid! And she's still serious and so SO sensitive. She's been doing that weird startley thing that resembles way too closely the infantile spasms she used to have. She's doing it in response to air blowing on her, noises, anything really that would startle her is causing a huge exaggerated startle and big gasp. We've had it tested before, when she was in the hospital years ago and doing it so we insisted on an EEG, and then blew on her a bunch of times. It didn't register at all as any type of seizure...just some weird hypersensitive reflex. I'm trying not to worry too much about it but I hate to ever see her doing anything that reminds us of a seizure! She was supposed to have an AFO appt today but with her hypersensitivity, we decided to go ahead and reschedule it to next week. No way she was going to tolerate the casting process (which includes a loud saw they use to cut the cast off), so we canceled last minute. She had speech this morning and did OK with that, but they took it easy and cut it a bit short. Just very serious today. And quiet. And tense. Super cold clammy hands and feet. Something is definitely way off with my girl. Tonight (ironically) I got a call from a home EEG monitoring company. Apparently Reagan's neurologist watched the video I sent him over a month ago and decided she needed to have another EEG. Well I was a bit taken aback by this, since I never even got a call from the nurse telling me about this (and I've NEVER spoken to this neurologist over the phone)...so I told them to call me back. They wanted to hook her up as soon as this weekend!!! Not sure I want to spend my entire weekend with my girl connected to an at home EEG...but at the same time she has been doing some questionable things that we might want to have checked out. But what's the chance she'll still be doing them this weekend...probably none. Ugh. So hard to make these decisions! I guess I'll talk to the nurse tomorrow and try to figure this one out. Taking my girl in for botox tomorrow! We got a call late this afternoon saying her PM&R doctor had a last minute cancellation and they can squeeze her in. She's had botox in the past (5+yrs ago) and we don't really think it worked, but I think anything is worth a shot at this point. She's just been so tense and so tight lately (like lifting a board)...we need something to break that tone!! Please pray that it goes smoothly, as painlessly as possible, no unwanted side effects, and that it actually WORKS this time around!!!

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