Reagan woke up laughing this morning and has been laughing ever since! Very silly today. Not sure what the reason is for the laughs, sometimes they sound a little on edge/tense, but she's held it together. This morning she had speech and did OK with that. It can be hard to keep her focus when she's vocal like this. I do wonder if she's vocal because she wants to tell us something...but can't. I busted out her PODD and tried asking her some questions. Didn't get a huge response, but she did vocalize when I got to a few things so I took that as I was on the right track and she ended up on wanting a drink so I gave her some water on a swab. Not sure that was really what she was trying to convey, but we tried. Lots of gas today, which could be part of the reason she's been so vocal. She had school this afternoon and her teacher brought a video of her class at school singing her happy birthday!! SO sweet! I love it. Unfortunately, Reagan responded the way she usually does to the happy birthday song and did NOT enjoy it. Oh well. It's the thought that counts! She did OK with school/speech and then we got in a quick bath before her nurse left. She's been super spitty today. First soaking her stuffed pony she got for her birthday and then her hair/pants after her bath (she puts her hand in her mouth and then down on her lap...over and over and over again)! Tonight she continued to be vocal/laughy until she finally dozed off. Not sure where she's headed but hoping she holds it together as we've got her yearly ophthalmology appt tomorrow (which is not easy to reschedule)!
By the way...Texas Children's Hospital did a blog post about Reagan today! Here's the link!
Loving all of these timehop bday pics! Had to post some more of this precious girl...
Wednesday, March 22, 2017
Tuesday, March 21, 2017
Today is my girl's 10th birthday! Hard to believe she's already 10! Sweet girl. She's had a good day today. Busy, but good. This morning we had a nurse orienting and she was very vocal but patient with all of the talking. Then at noon she had PT and did well with that. At 1pm the DME rep came with new knee pads for her stander (with air cushions to hopefully prevent bruising on those delicate knees) so we got her up in her stander for a while. She was still in her stander when OT got here with a beautiful butterfly balloon for Reagan. She did well with that and then was done with therapies for the day. She took it easy the rest of the afternoon. Tonight we sang happy birthday to her and I gave her some icing. She was a little vocal about it, which I interpreted as her not really wanting it. It did make her super spitty. Afterward, we watched Beauty and the Beast with her brother (it was his first time ever seeing it)...it's one of her favorites. She watched the entire movie, music and all, no problem! When I took her out of her chair, I noticed a stink, she had gone on her own! That doesn't happen often but she did it both yesterday and today! She seemed to feel better after that and the next thing I knew she was fast asleep! Sweet birthday girl! Love her SO much!!
Monday, March 20, 2017
Reagan had a great day today. She slept well last night and woke up this morning in a great mood. Grandma was still here this morning, so of course she was happy about that. She had speech and school today and she did well with both. Her speech therapist was so excited because while using the PODD on her computer two separate times she said "I read" using eyegaze (when her therapist was talking to her about a book)! She also had two poos (on her own) today! It's been days since she's gone (because her body has been so tense), so I'm just happy that she finally went and even happier that she did it on her own!! She had school this afternoon and did great with that as well. She's just been in a really great,content mood today. Hoping she saves some of this awesomeness for her birthday tomorrow!
Some sweet timehops from this day in history...
Some sweet timehops from this day in history...
Sunday, March 19, 2017
Reagan slept well last night and then just kept sleeping this morning. We weren't really sure what we were going to get when she finally woke up! We had tons to do this morning, so her sleeping in was really a blessing. She did eventually wake up around noon...with a cry! We rushed upstairs to find her completely soaked...thank God! She settled down the second we got her out and cleaned up! Sweet girl. She was actually very calm and content. We brought her downstairs where she promptly fell back to sleep! She was still asleep at 2pm when the party started. It was a "super" party and everyone had a great time. We had a bouncy house and a balloon animal artist (her brother's obsession). Reagan continued to sleep until 3:15pm when I changed her into her party dress. She wanted to fall back asleep but we made her stay awake! The balloon artist made her a pretty butterfly balloon and then we sang happy birthday and cut the cake! After the last people left, we took her into the bouncy house for a bit. She seemed to enjoy it, even with her brother bouncing around like a maniac! After coming back in and laying her down, she dozed right back off. Precious girl. Everyone is exhausted but it was a great day. And her being sleepy was probably the best case scenario for her. She limited her exposure to germs and was extra laid back and calm when awake! Win win!
Saturday, March 18, 2017
Reagan slept well last night waking up sweet and laughy this morning. She was sensitive to talking and air. Still holding pees but then FINALLY went on her own this morning (with a cry). There were many other cries as the day went on as she was so super sensitive (especially to talking). She held her pee again all afternoon, refusing to go with the warm water, but finally went on her own again. Only two pees today but at least they were on her own. She was crying off and on this afternoon so her nurse gave her something and then laid beside her until she was able to finally fall asleep. And then she slept. Hard. She stayed asleep the rest of the night and didn't even budge when Mike transferred her back to her bed. Hoping for a great day tomorrow for her bday party!!
Friday, March 17, 2017
Reagan was restless again last night but she definitely got some sleep.There were a few times last night and this morning that I saw her thrashing around and went in to check on her only to realize that she was still half asleep. Our Friday nurse was out today but they did find a last minute fill in nurse. Reagan has continued to be seriously tense again today. No pee on her own. This morning I must've tried the warm water trick 25+ times with no luck. She went 17hrs or so and the nurse finally cathed her just before 2pm. We didn't measure it this time, but it didn't seem like nearly as much as we've been getting. I tried the warm water several more times and we even gave her a warm bath, but nothing. Tonight we had a nurse come back out just to cath her. Again, we didn't get a ton, but at least we got some out before bedtime. REALLY praying she'll stop all of this and just start peeing on her own again. I worry about having to cath her too much. I really don't want her to become dependent on it because it's not fun for any of us! This afternoon/tonight she seemed a little more relaxed. We're finally getting some little laughs out of her. Hoping this means we're on the right track! She really needs to make a full recovery soon as this weekend is her and her brother's big superhero birthday party! This is STRESSING ME OUT!!! Praying these holding issues will be gone by morning, but if not, at least she has a nurse working tomorrow that can cath her no problem. Please keep my girl in your prayers!
Thursday, March 16, 2017
So today was an awful day. Reagan was awake and moving around a lot last night. Very restless and stressed. She slept some, but not much. Very serious today. Her body is giving her hell. Nonstop movement. The chorea is through the roof. At times she's moving so much and so quickly, she looks as if she's in fast forward! She's so tense and stressed she's sweating herself wet. Definitely neurologically off. And of course, she's clenching. No pees or poos. NOT a good day to be nurseless. I tried at least 15 times or so to get her to go with the warm water. Nothing. She's just SO tense! The agency sent over the nursing supervisor to try to cath her. No luck. Finally around 12:30, Mike came home from work to watch Ryan while I loaded Reagan up and took her to the pediatrician's office to get cathed. They got it. 415mls (it had been about 16hrs). This girl. Not sure what we're going to do with her. She held the rest of the day. Tonight we had another nurse come by at 8pm and she was able to cath her again. Not as much this time but it had only been 6.5hrs since the last cath. Ugh. Praying for pee tonight! And a more relaxed girl tomorrow.
Wednesday, March 15, 2017
Reagan was up most of the night last night. She just couldn't seem to stay asleep. Nothing was helping. Still very tense in her body today. And wanting those hands in her mouth. Ugh. Only one therapy today, speech, but Reagan was so tense her therapist couldn't get much done. She did get increasingly tense as the day went on. Her nurse tried giving her something but it didn't seem to help. We tried a nice warm bath. Also didn't seem to help. She was due for an enema today but we didn't even bother. She was just too tense to attempt. Tonight the tension finally caught up to her and I had to use the warm water to get her to go (thankfully the rest of the day she went on her own). Really hoping this isn't a sign of things to come.
Tuesday, March 14, 2017
Reagan slept well last night and woke up alert and spunky this morning! Lots of smiles but very tense in her body. So so so tense. Still putting her hands in her mouth a lot and that poor left hand is starting to break down. Her nurse put an arm restraint on her off and on today to try to keep it out of her mouth. She wasn't happy about that so she had to do it for short periods of time because it did seem to frustrate her. She had PT this afternoon and her poor PT tried. She was just so tense, there wasn't a lot she could do with her. A little later, OT came and worked on some more (much needed) stretching. Reagan tolerated it but fought it (not sure there was much benefit but it was worth a shot). Oh my girl. What will we do with her. Prayers for some relaxation for my girl...