Tuesday, October 21, 2014
It's been another good one. Reagan was a little hesitant to fall asleep once in her bed last night, but she eventually dozed off with clonidine. She slept through til about 5am and then was awake for a bit. She fell back asleep but a loud motorcycle driving by woke her back up and then she was wide awake! Thankfully, she was super sweet and smiley! She's been super precious today. She had PT this morning and did great for that. She was doing great kneeling and doing switch work so her PT got a little over excited and continued it probably a little longer than she normally would have. After that she was pretty zonked. She'd do it again, but not for nearly as long! I know with all of her nonstop movement, we never really think about her body fatiguing, but as any kid with mito, she's going to tire much more easily. This afternoon she had OT and did a great job for that as well! She sat in her wheelchair and they worked on her head control (so she didn't use her i2i headrest). They've been doing this a lot lately and her head control has improved significantly. She still fatigues after a while, but it's way better than it used to be! Everybody is loving the sweetness and smiles this girl is giving us today! She's been biting her lower lip and grinding her teeth off and on, but otherwise she's been perfect! Definitely praying for more good days to come!
Monday, October 20, 2014
Reagan had a good day today! She woke up a little early, but she was a good girl! She's been very sweet and smiley all day! She's had a busy day of therapies...vision/speech this morning (she was very vocal and "talking" the whole time), OT shortly after (and even got in her stander), and then "school" this afternoon. She did great for them all! She has really made quite the recovery after such a horrendous day on Saturday! The only thing I've noticed that's still a bit off, she's getting the "one red ear" off and on (it's her right ear), which is an indication of dysautonomia. She's also kicking a lot and has her hands shoved down her throat, but that's not unusual for her! Tonight I made her sit cross-legged in her chair and that really helped to settle her and she was able to stop the constant movement for a bit! I leaned over her and put my head on her head and she dozed off! She's such a doll! Love that girl! Hoping she has a good night's sleep tonight and has another good day tomorrow!
Sunday, October 19, 2014
Reagan slept last night and kept sleeping this morning! We went to church and came back and she was still asleep (her nurse was here with her)! She woke briefly while we were gone and seemed a bit agitated, but fell back to sleep. We were pressed for time when we got back, so we immediately started changing her to get her ready to leave for the walk (at this point we weren't even sure how she was going to wake up and if she was going to be able to go)! We woke her up, but she didn't seem to mind. She was cool and calm. We got everyone loaded up into the car (as well as two all-terrain strollers) and headed out to Old Settler's Park in Round Rock for the 3rd Annual Energy for Life Central Texas Walkathon! Reagan was great, but the music/DJ was loud, so I immediately put on her noise cancelling head phones. The only time she seemed to be getting a little sensitive was during the national anthem, but I just talked her through it and she was fine! They even spoke to everyone ahead of time and as team "Rallying for Reagan" walked past the starting line, they turned down the music and all just shook pom poms (instead of clapping)! The weather was nice, although in the bright sunshine it did get a little warm! It was perfect sleeping weather though, so Reagan dozed off almost immediately. We had 50 or so people on our team this year so it was a really good turnout! We made it through the whole walk, and pictures afterward, without her waking up. Daddy even decided it would be easiest to just walk her back down the road to the restaurant we were meeting up at, rather than taking her out of the stroller to go a mile down the road and risk her waking up. She slept through lunch and didn't wake until we put her in the car! She didn't last long though and both she and her brother were fast asleep the whole drive home! She woke up again when we brought her in the house, but fell back to sleep shortly thereafter. She woke up long enough tonight for a bath and then was back out in no time! All in all, it turned out really well (considering how bad things were yesterday)!! Thank you for your prayers and thank you everyone so much for coming out to support my girl! We couldn't do it without you!
|Reagan's Charlie's Angel nurses!|
Saturday, October 18, 2014
Today started off well enough...Reagan woke up surprisingly happy and we thought all was good. Boy were we wrong! I had my second 5k in the morning, so while I was off running, Reagan dozed back off to sleep. All was good and she was sleeping away, when all of a sudden she woke up crying! And that sums up the rest of the day! Nonstop screaming crying! Her pain/sleep medicines weren't helping and she was miserable! I honestly don't remember the last time she was this bad! Biting, flailing, kicking...she had superhuman strength! We were having to use all of our body weight to try to stop her from hurting herself. Eventually we did end up having to put both arm restraints on her, because we just couldn't hold her down nonstop and she couldn't be trusted even for a second! It's been AWFUL. Grandma drove in and we all took turns trying to soothe her, but it was not working. Grandma and Daddy had a little more luck getting her to fall asleep, but not much was helping. This continued on until 1-1:30am and now she's finally asleep. No clue if it will last or if by some miracle she'll be well enough to go to the walkathon tomorrow! We could sure use some prayers for our sweet miserable girl! Goodnight.
Friday, October 17, 2014
It's been another good one for my girl! (I keep telling her she needs to hold on for THREE more days, since the walkathon is Sunday!) She woke up this morning laughing and never went back to sleep! She was super laughy this morning, but she had lots of laughs all day. Only one therapy today, speech this morning and of course she did well with that. She was super sweet and there were many photo opportunities...she couldn't have been any cuter! Her hands and feet have continued to be cold and clammy off and on and this afternoon/night she's been particularly spitty...but still good. Tonight she did give us a bit of grief in the sleep department. She fell asleep on her own in her chair downstairs but when Mike carried her upstairs to her bed, she woke up and then wouldn't go back to sleep. She was actually getting increasingly frustrated and fussy so finally we moved her to her chair and with some coaxing (and oils diffusing) she eventually fell asleep! It definitely seemed to be tummy pain related so I'm hoping it will pass and we'll still have a sweet smiley girl tomorrow!
Thursday, October 16, 2014
Reagan had a pretty good day today. She started out a little serious again, but she's mellowed out as the day has gone on. She had another good session of PT. She's using a tumbleforms "raised roll" (it's flat on one side so it doesn't roll) and laying Reagan on it to help open up her back (she's always in flexion, crunching forward). Every time they do it, she completely relaxes into it, lays with her arms extended out and relaxed, and seems to love it! Her nurse is going to start doing it at least once a day, to see if it helps to get her out of crunchmode! This afternoon she had OT. She did a lot of switch work and she's getting very good at it! She's been pretty sweet and a little laughy today/tonight. Her hands and feet are definitely cold and clammy, so I'm not sure what that's about. Tonight she was a little laughy (even as she was dozing off) but she was asleep when we laid down. Hoping she gets some rest tonight!
Wednesday, October 15, 2014
Reagan slept well last night and woke up still a little serious today. Tense in her body. Last night when she was in bed dozing off, I noticed her doing the tensing up thing, where she kinda startles eyes open, arms stiffen, and then it takes her a bit to relax again and she closes her eyes. We've seen this move off and on for years now. It looks more seizureish than I'd like, but at the same time, her EEGs have gotten better and better, so we've tried not to worry about it. She did it again once or twice this morning when her nurse was holding her (and she was sleepy). Probably something I need to get on video, but just haven't. Reagan had speech this morning and then school this afternoon. I think she did pretty well for school, but was probably a little less interactive for speech. Tonight she was good for her nurse while we had Bible study at our house with our neighbors (she was even a little laughy). Then right around 10pm, Mike laid down with her and was able to get her to sleep! We are all ready for bed and it's only 10:45pm...an all time record! It's literally been years since we were in bed before 11 (we're rarely in bed by midnight)! Gonna go enjoy my almost 7hrs of sleep! Good night!