Today was very similar to yesterday. Reagan slept in her chair last night, she did wake up fairly early, but I think she got some sleep. Today she's continued to be tense, vocal with over stimulation, and just overall a little kooky. She did not nap at all today. Her nurse gave her oxycodone at one point to try to take the edge off and hopefully allow her to rest...didn't happen. She's still very crunchy, hands in the mouth A LOT, lots of chorea, a little gunky in her throat at times but no actual nausea (but she's still getting Zofran). Not exactly sure what these days are. Are we headed toward bad days, are these milder versions of her bad days??? No clue. It's hard to get your bearings when you have no idea where you stand! Hoping and praying for her to settle down in the upcoming week and actually have some legitimate 100% good days (I honestly don't remember when the last one was)!! Now, on to trying to get this restless girl to sleep tonight!!
On August 21, 2007 (at exactly 5 months old), Reagan had her first cluster of seizures. She was diagnosed at 6 months old with Infantile Spasms and 2 years later with Mitochondrial Disease. Life has been a roller coaster for us and our baby girl but we've been blessed with wonderful friends and family to help us though this!