So today was not the better day we were hoping for! Reagan had an awful night last night, tossing and turning, moaning and crying! It was brutal on all of us! She was miserable...we were miserable! Nothing in our arsenal was working! Finally around 3:20am I gave her a dose of clonidine and she dozed off. Around 5am I heard her fussing and awake again, but she settled down and I think fell back to sleep. I heard her again at 6am, but she was laughing! I thought, maybe we're in the clear?!?! No such luck. She was pretty tense all morning. She eventually escalated to the point of crying and her nurse gave her some oxycodone. That helped her take a nice 1hr nap, and when she woke up she was OK for a few minutes and then the tears started right back up! I went in and was able to distract her for a bit, but you could just tell that something was bothering her. Something was hurting her. Her nurse gave her a dose of clonidine and eventually she did settle down and fall back to sleep. Her body was fighting her though and it was quite a while before she was finally able to shut her eyes and keep them shut. I would definitely call last night and this morning a bad day. I hate seeing my girl like this. It's such a helpless feeling as a parent, because nothing we do really seems to help. Time. Time is the only thing that helps on these days. Hopefully she'll have a quick turn around...especially since these off days have been dragging on and going on for quite sometime now. Tonight she seemed to be feeling much better. She was still chewing on her hand quite a bit and pretty spitty, but she was much more laid back. She even gave me some laughs and little smiles. Maybe this means we're headed in the right direction? Please keep it in your prayers that tonight is a much better night and tomorrow is a better day! We're all ready for good days!
Father's Day lunch with my Dad...Ryan loves his Grandpa!
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!