Saturday, June 12, 2010
This has been one heck of a day...definitely not in a good way. Reagan had a horrible time sleeping last night. We put her down late but she was back up by midnight crying. I held her for a while (she was sleepy but kept startling herself back awake)...eventually she fell asleep in my arms. She woke back up around 5:30am and was awake. Lots of chorea, hyperalert. I sat up with her for a while and watched some tv. She finally fell asleep but woke up the second I tried to lay her down. In sheer desperation I put her in our bed and we tried to sleep with her whining beside us (she never fell back to sleep). Finally around 7am I gave up and just got up with her. She was very whiny most of the morning, but the crying kicked in full force this afternoon. I've seen some head twitches again...the first that I've seen since her two EEGs. After she had the EEGs the twitches tapered off and then before we knew it, they were gone. Now that she's not feeling well, they are rearing their ugly heads once again. She's been very spitty which I think contributed to the two large throw-ups she had tonight. Poor thing...she's really nauseous and feeling lousy. Her cheeks have been hot and red, her hands and feet wet and clammy, something's definitely up. She's super miserable and beyond exhausted (but just can't fall asleep). I wish we knew the lab results from last week, maybe they could tell us something. Please say some extra prayers for her...she really needs them.