Wednesday, April 21, 2010
This girl. She's been up since 3:45am. And when I say up...I mean wide awake and kicking! I got up with her thinking surely she'll get tired and go back to sleep. No way, at 6am she was still going strong. Then I tried her out in our bed and she just laid there moving about not sleeping a wink. Finally around 7:45am I gave up trying to sleep and we were up for the day. Lots of movement today. The chorea has really picked back up and she's so tense. The sweaty hands and cold sweaty feet are back too. She's also been running a low grade temp most of the day. Who knows what this is all about! I really thought she was on the road to recovery, now I don't know what to think! Her mood has been great though. Lots of smiles and laughs. We went to feeding therapy today and she did really well, except for the fact that the therapist had a hard time holding her because of all the extension. She ate some applesauce, not too crazy about the veggie sticks today. But no throwing up today so that was great. Yesterday afternoon I left messages for the nurses of the two different epileptologists Reagan sees. Of course the new epileptologist's nurse was the first to call us back. She said that the eye movements do sound like seizures. But since they are so infrequent she said just to watch her and if she does it again and they'll order a 23hr EEG. Then finally this afternoon I heard back from her main epileptologist's nurse and he's thinking maybe it's just chorea related and not actual seizures. I sure hope so. Both suggest just to wait and see what happens. Hopefully nothing. Please continue to keep her in your prayers...if we could get her seizure free AND healthy we would be in absolute heaven!