We've had some good days lately...exactly 17 to be exact! Well, we did have a miserable night a week ago and all day last Saturday, but my girl was sick (and wasn't technically having a "bad day"). It was rough, we all managed to pass around some sort of respiratory bug and it hit Reagan hard. Tons of thick green snot, yellow gunk running from her eyes, and nausea due to all of the drainage (and insisting on breathing through her nose didn't help). It was a rough 36hrs. She finally slept Saturday night and then woke up feeling much better on Sunday. Still sick, but not gagging and gasping for air anymore. She slept a lot Sunday and Monday and has had a pretty normal week since then (although still very congested). Wednesday we went to horseback riding and then to an opthalmology appt. We have a new opthalmologist since her previous one went on a leave of absence (all of her specialists seem to be leaving). It was a two hour appt but the doctor was in an out in less than 10min (with zero personality). She did say that Reagan's astigmatism may be making things a little fuzzy for her and we may want to try glasses again. So sounds like a new pair of frames are in her future. On Thursday we had the DME lady come out (who is also leaving), we ordered a new sling for her hoyer lift, a new bath chair, talked about getting the carseat changed out to the booster, and also discussed the new stroller we're going to be ordering. I feel like I've spent half my time lately following up about new equipment! We should be getting two new tomato chairs next week (in the next size up) and a stair lift should be coming sometime soon as well. Lots of things needing upgrading since Reagan's last growth spurt/weight gain. We also found out that our Wednesday/Thursday nurse will be leaving. Ugh. Don't get me started. The constant struggle with nursing. She's the hardest to replace because she not only worked more days for us than any of our other nurses, she worked a super late shift (so we'll probably be forced to replace her with two nurses)! Double ugh. Thursday night we noticed Reagan definitely had an increase in tone and movement. She's been super crunchy, rolly/squirmy ever since. Loving rolling onto her tummy, we're having to keep a close eye on her that she's not pulling her tube. Last night she was particularly hard to get to sleep, so I was a little worried about how she was going to be today. Thankfully she woke up smiling. She's ridiculously tense in her body, and has shown a little agitation here and there, but overall pretty smiley and sweet. Hoping we're not headed the wrong direction. While I've enjoyed all of these good days, there has been a constant concern as to when they might end. Ryan has now lost both front teeth so he's got that toothless grin going. We also made an adjustment to his ADHD medication and he's had two really good weeks in school ever since. Hoping everyone's good days continue!!!
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!