Saturday, November 19, 2011
Reagan slept well last night. She fell asleep late (with the help of clonidine) but woke back up fairly quickly. Mike laid down with her and thankfully she went back to sleep without a problem. She was awake by 8am when we were rushing to get out the door to leave for our tennis match. She was a little clammy but calm. My dad and stepmother came in last night so they could watch her for us. Reagan was a good girl and she even behaved herself for a couple of walks around the neighborhood. She's definitely giving signs of impending bad days (hands, feet, and nose are all ice cold but her body is very sweaty and she has that "bad day smell") but so far she's hanging in there and has been pretty mild mannered and quiet today. I'm hoping she'll fight them off and keep giving us good days. We did start her on her full dose of EPI-743 yesterday. She's now getting 100mg 3x a day (we went up from 2x a day). I'll be interested to see how she does at the full dose. Overall, I think it's hard to say what if any improvement we've seen lately because she went from being sick then straight into bad days (which could have been triggered from being sick). But I do think we're definitely seeing an overall increase in her vocalizations. I would love to see less bad days...but I'm not sure if this medicine will necessarily work for that. Please keep this in your prayers...and that we can avoid the bad days this go round!!