Reagan was awake and vocalizing this morning around 6:30am. I went in to check on her and she was laying completely on top of her covers. I tucked her back in and told her to go back to sleep and she was quiet for another hour. Then just before 8 she started back up again, so I moved her to her therapy room and put on cartoons. Ryan slept in this morning, not waking up until around 9am. Love that. That means he wasn't in our bed at 4 or 5am waking us up (which has become the norm lately). Reagan has been pretty crunchy and tense all day today. Lots of vocalizing...in an unhappy way. This morning her nurse saw her doing the fixed head turn (aka seizure) and we saw something else questionable this afternoon. She's definitely just all around off today neurologically. Tooth grinding. Super sensitive to talking. She only had one therapy today, OT. Just before therapy she was starting to freak out a bit. Thankfully her OT knows her very well and was able to try some relaxing techniques with her and at one point she even fell asleep for a few minutes! Sweet girl. It was not a good day for my girl today. Tonight our nurse stayed late so we could meet up with our Bible study group for a pot luck dinner. It was nice to get out but I was worried about my girl. She was getting increasingly tense and was super stressed by the time we got home. She was able to finally doze off with the help of some medicine and mommy's tight squeezing. Thankfully Dad was able to get her moved to bed, now we're just praying she can stay asleep!
Ryan was craving pizza so we stopped for a quick slice at whole foods!
He was super happy to get to eat upstairs where he could people watch!
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!