Reagan had a hard time going to sleep last night. Mike laid down with her and she'd fall asleep but would pop back awake as Mike would try to get up. She was pretty restless and would get vocal off and on. I was afraid to give her clonidine (after the adverse reaction she had the other night and because she was already getting a little kooky), so I tried oxycodone. Then I laid down with her for another 30min or so and she eventually dozed off. That put me going to bed at 1am and waking up at 5am to run. When I woke up, she appeared to be asleep but by the time I was headed downstairs, I could hear her talking. I changed her diaper and left her in bed while I went for my run. She was still awake when I got back so I changed her again and moved her to her tomato chair. No going back to sleep for either of us. Well, she did eventually fall back asleep, but she waited until her speech therapist was here! She dozed off in the middle of her session! She slept for an hour or so but kept popping back awake here and there. She's definitely having some temperature regulation issues today. Her hands and feet are very clammy and bright red. She's been a lot more tense in her body today. Very crunchy and even shaky at times. A little kooky/bitey (today and yesterday)...but OK. She's still super smiley and wide eyed. She did have one weird episode this morning. She was on the floor getting her diaper changed when her nurse noticed her with her head fixed to one side. She picked her up, but she just kept doing it. By the time I got in there, she had moved her to her chair and she was sitting with her head turned to the right (which is the opposite of the way she normally turns) and her eyes fixed looking upward to the right. I was able to get her to blink and move, but she just kept her head stuck in that position for a while (maybe 5min). And then she snapped out of it...or back into it! Not sure what that was about but it was definitely seizure-ish behavior. Today we were actually set to start a transition over to Onfi (she's been on APO-Clobazam for 6+ years but we get it from Canada and it's backordered until April so we're going to run out). Theoretically Onfi (Clobazam) is the same thing as APO-Clobazam...it's just made by a different manufacturer. But if you know anything about seizures, you know that changing manufacturers can sometimes cause problems. So for all of these years, I've preferred to just pay out of pocket and continue getting it from Canada just to not risk any issues. Unfortunately, we no longer have that choice (as we will certainly run out long before April). So the plan is to slowly wean her off and onto the new medication. We'll just replace small doses of it with the new stuff until she's on all new. Really praying we don't see any issues with this transition. Since we already saw some suspicious behavior today, I decided to just wait on the transition.
Super awake and super spunky at 6am!
No chance of sleep after my run today!
Someone's tired after getting up so early this morning!
Fell asleep on her own tonight but keeps popping back awake.
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!