Friday, October 14, 2011
The bad days are back. Well, at least I think that's what's going on. I'm not sure if it had anything to do with adding the propranolol or not but that's the only change we've made lately. We had gone a month and 10 days without any real bad days. A few "off" days here and there, but no screaming crying, awake all night sort of days in such a long time. But Reagan was headed in that direction yesterday and last night she started up with the full out screaming crying. She'll be OK one second and then the next second, she's screaming bloody murder. The weird thing is that her hands and feet haven't been clammy at all (well her feet are a little cold tonight) but her heartrate is through the roof, so I'm not sure how much good the propranolol is doing at this point (of course we're only giving her 3mls and the doctor wanted us to give her 5mls). She didn't sleep much last night (I stayed up with her all night and Mike didn't get any sleep either because she was so loud). She slept maybe 45min to begin with and then slept another 3hrs later on. I only slept about 2.5-3 hrs total last night. Definitely not the best timing, since I'm playing in a tennis tournament today and tomorrow!! She's been miserable!! Lots of shrieking and screaming all day. Lots of chorea...including little fits of it where she's kicking so much it looks like she's running in place. Definitely biting. We've had to keep an arm restraint on her at all times and I've felt teeth on me quite a few times today! It's been a loooooong day (and night). I just can't believe we're here again. I was really hoping that maybe we were done with these days altogether. Please keep it in your prayers that she comes out of this quickly (for her sake and for our sanity) and that all "bad day" symptoms are gone by the time we leave for Stanford!