So my girl really didn't sleep much (if any) again last night. She was VERY restless. Tossing and turning nonstop. She'd doze off for a few seconds, only to jolt herself back awake again. We heard her laughing kooky laughs off and on throughout the night, which is good that she was still happy, but bad that she was still not sleeping. This morning she was content for the most part. Still lots of kooky laughs, but still very restless. Better in her chair...lots of tossing and turning when on the floor. Swiping at her face/nose a lot. Her poor little nose is all red and scratched up! Her nurse was here until this afternoon, so it wasn't until I was around her for a while this afternoon that I realized she's very much on edge. Tossing and turning nonstop (chorea) and very trembly. She basically looks like she's having a bad day without the crying. Poor girl. We tried something to help calm her down, but if anything, it had the opposite effect. She was more restless. More irritable. More uncomfortable. Ugh. SO frustrating. We had a long conversation with her complex care dr a couple of weeks ago about this, but big surprise, we never heard back from him. Guess I know who I'll be calling first thing in the morning. It's just so upsetting to see her so uncomfortable and not being able to help. It's been a nice long run of good days...but not enough. It will never be enough. I don't want to ever see her in pain, and especially not every week! My sweet girl. Please pray for her. She is clearly at war right now with her body and nothing we can do seems to help. Praying it was pass quickly and she can finally get some much needed rest! Please keep her in your prayers!
This morning (sensitive hence the head phones) but still happy
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!