Thursday, July 9, 2009
Sleep last night was the same. Reagan only woke once but went back to sleep quickly, no complaints about that. Unfortunately, her great mood from yesterday was long gone today as the tummy pains set in first thing this morning. Lots of crying. Poor thing. Why is it so painful for her to have a bowel movement? There is one last test to do that might give us some sort of clue, an endoscopy/colonoscopy scheduled for the 28th of this month. I sure hope that yields something, some clue as to what is causing her such pain. It really ruins her day. She cried all morning and then was fussy most of the afternoon. That makes for a long day (and not much packing). Hopefully tomorrow will be a new day and she'll wake up good to go. She's got two therapies back to back tomorrow morning, so we need her happy and ready to work. I know I have mentioned it lately (usually no news is good news), Reagan's seizures do seem to be reduced on the Clobazam. She's still having them when she wakes up and some of them are pretty strong (yesterday she literally slapped me in the face 3 different times when she was having a seizure), but through the course of the day the number has gone down significantly. She's having less "twitches", which for a while were almost nonstop. I'm hoping that we'll just see less and less seizures as we continue to wean down on the Keppra and go up on the Clobazam. Please keep that in your prayers. It would be such a blessing to finally get her to a point where seizures don't rule every aspect of her life. Seizure freedom would be awesome, but I'd be happy with seizure control at this point.