Our girl finally woke up today and she seems to be doing much better! Her temperature regulation issues have finally resolved (as they usually do after a sleepy day) and she's back to having 8 wet diapers on her own...so that's really good news! We did notice she's got a big mosquito bite on her right cheek...must have gotten her while she was swimming Sunday and we just didn't notice it because she slept all day yesterday! She's also had the hiccups multiple times today. We're not sure if it's reflux related or not but she does sound a little more wet in the throat. She's been a little vocal/kooky (easily provoked by talking/or her brother) but otherwise sweet and precious. We had an routine checkup this morning with the endocrinologist. Ryan was a mad man and boy was I missing having my Dad here to babysit so we don't have to take him to appts! We spoke again about puberty (we're going to have to bring her back in for early morning labs so they can check her hormone levels and a bone age scan). This doctor is pretty adamant about not stopping it. She said the benefit to her bones outweigh any perceived inconvenience on our part. When kids are non-mobile and don't stand or bear weight through their bones, their bones don't get very strong and many kids will have such brittle bones, they'll suffer breaks just from being lifted or bumping something! Not good. So even though I totally understand her justification...it's just not something any of us want to deal with. So I guess for now, we'll put it on the back burner and address it when we have to. But from what I can tell is there really are NO good options. After we got back home from Reagan's appt, she had a huge poo on her own and we decided to just clean her up and put her straight into the tub (she was already due for a bath)! So we were able to get a bath in before OT and then during OT...another poo!!! Of course, now that she's clean! She was good though and we're happy she got that out of her system! Tonight we had our neighbors over for some grilling and swimming. I stayed in with Reagan most of the time because it's SO HOT outside (especially in the afternoon)! Ryan swam until it was dark and then we still had to drag him out of the pool! After I got Ryan to bed, I held Reagan and snuggled with her until we both fell asleep! Daddy carried her to bed where she, of course, immediately started getting super vocal so he had to lay down with her until she fell back to sleep. Another night of us not getting to bed til after midnight (and I've got to run at 5:45am)...oh sleep deprivation!
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!