Quick update. Reagan was restless last night. Very squirmy, vocal, and just not sleeping well. She was still smiley this morning, but also very tense in her body. She did well with both speech therapy and school. We stopped the Zofran, but my gut instinct was that we weren't out of the woods just yet. Tonight she got increasingly sensitive and tense, and then had a major freakout about 15min after her dose of clonidine. No idea if it was the clonidine that made her crazy or what, but thankfully a dose of Lortab seemed to counteract the effect. She's sleeping peacefully in her chair (with her arm restrained). Hopefully this was just a fluke and she'll sleep all night and wake up tomorrow feeling fine...please keep her in your prayers.
Doing our best five for CDKL5 awareness for Lily! #handsforhope
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!