Reagan did not sleep much, if any, again last night. She was OK to just lay in bed, but she kicked and kicked and kicked and I found her sideways and upside down in her bed a few times! She's been pretty serious today and more calm. Less chorea, but still having it in bursts. She only had one therapy today, OT, but she did well with that. This afternoon she's been very sensitive. I've set her off a few times, or so I thought I did. It turns out it was really just serious tummy pains coming on in waves! From about 5-7pm she'd cry off and on, then finally it just seemed to pass. She, of course, looked pitiful after 2hrs of crying, but she seemed to be stable. We just kept it quiet and low key the rest of the night. She eventually dozed off in the loaner chill-out chair around 10pm without any medication. Mike was able to transfer her to her bed where she seems to be sleeping soundly. Hoping she can finally get a good night's sleep tonight and wake up in the morning feeling much improved! Please keep my girl in your prayers!
Tuesday, March 31, 2015
Monday, March 30, 2015
Reagan did finally sleep last night. She's still had a TON of chorea today. It tends to come in bursts. She'll kick around like crazy for a while and then have periods where she's still and almost calm. We went ahead and canceled speech this morning because she just wasn't going to tolerate her wheelchair. She did benefit from having both PT and OT this afternoon. They were able to get her out of her chair and loosen up a bit. She definitely seems a little less stressed today...especially this afternoon...but those bursts of chorea are relentless! Thankfully she seems pretty calm and not really sensitive to anything. I really hope we can get her to sleep tonight, but I'm not counting on it.
Sunday, March 29, 2015
Reagan had another OK day today. She didn't sleep much, if any, last night. She was very active and just kicking around nonstop in her bed. The chorea has been OUT OF CONTROL today!! I don't remember the last time I saw it this bad. She SO tense, arching her back, constant extension. kicking nonstop...it's exhausting to watch. She's also still having a lot of gas, so I wonder if it is at all GI related. Poor girl. Thankfully, she doesn't seem overly sensitive or in pain or anything. Not at all upset, just more on the serious side, but with lots of crazy laughs. Definitely something neurological going on. Hoping she'll snap out of this soon and give her body some rest. This afternoon we did finally meet with Make a Wish. We're talking to them about a trip, so we'll see. It's been a couple years now since we've been anywhere, so that would be nice for the whole family. So many great memories. Hoping my sweet girl can get some sleep tonight. Her eyes are so bloodshot right now, she desperately needs some rest!
Saturday, March 28, 2015
Reagan was a little restless last night but I think she slept some. She's had a pretty good day today. Been a little sensitive at times, but over all OK. This morning my nephews who are in from Miami were jumping on my stepsister's trampoline so Ryan went over and joined them for a bit. Then we all went over to a nearby park for a "kite festival", which literally consisted of two kites! It was put on by our realtor's group...they were giving away some kites, but they were so cheaply made, none of them got any higher than 5ft off the ground! It was a neat park though and Ryan enjoyed running around and playing with the kites but Reagan was not too keen on the windy weather! Afterward we went on a little drive through the beautiful hill country that begins only miles from our house! We drove through the Balcones Canyonlands Wildlife Refuge and then down around the lake. I'm still in awe of how beautiful the landscape is here, driving around we feel like we're sightseeing in California or something (it's SO much different than living in ugly Houston)! Then we came home and Ryan went to our neighbor's house to drop off a bday present and bounced in their bouncy house for the next hour or so! It was another crazy exhausting day! Ryan will definitely sleep well tonight. Reagan is a little on the kooky side tonight, so not sure how much sleeping she's going to do!
Friday, March 27, 2015
Reagan and Ryan both slept well last night. Ryan (thankfully) didn't wake up til I went in to get him at 6:40am to head to the dentists office. Let me just take a moment to tell you how ridiculously perfect this pediatric dentist's office is! It is SO nice...beautiful building, waiting room, treatment rooms. Everything is set up to cater to children. There are two rooms off of the waiting room...one is full of video game consoles, little play kitchenettes, toys, and scooters for the kids to ride around on and the other room is set up like a media room with a big screen tv playing a movie. Since it's almost Easter, they have easter decorations everywhere and Ryan couldn't get enough of the eggs! A nice distraction. They also play your choice of kids movies/cartoons from the tv screen above the kids while they are getting their teeth done (not to mention the treatment room is filled with toys and the doctor used a sugar free lollipop to get Ryan to open his mouth)!! Anyway, when we got there Ryan was ready for his morning milk (or juice in this case) so we figured we'd put the sedative (Versed) in it. Well, that didn't work. He immediately tasted it and we had to take another route. Down the throat! He almost puked it back up, but thanks to some fresh juice (without medicine in it), he managed to keep it down. About 10 min or so later, he started to get a little woozy. We took him to the treatment room where they put him on the papoose board...he didn't really seem to mind it much (he was already a little out of it)...but as soon as they opened his mouth up that all changed! He hated them messing with his mouth. They did xrays and then worked on his filling (which was deeper than she originally thought...he's got deep crevasses in his molars which will make them more prone to decay) and then she did a quick cleaning. It seemed to take FOREVER, but we were done and out of there a little after 8am. He was more groggy afterwards. Very goofy, slurring his words and unable to stand up without falling down, almost like he was drunk! Pretty funny. We decided, since he was out of school for the rest of the day and Reagan had no therapies, we would take a road trip to the Natural Bridge Wildlife Ranch just outside of San Antonio (about a 1.5hr drive from our house). It turned out to be the perfect day! We lucked out and didn't see a single school bus or field trip while there and everything ran very smoothly. Ryan was slightly interested in the animals, although once I let him out of his car seat (most kids rode around on their parents lap throughout the park), he was more excited about crawling around the car! We did have a fun incident with an ostrich that was pecking at our lock (and then realized that Reagan had a big poo diaper so we had to rush out of the park so that we could get out of our car and change her...thankfully we were already at the very end)! Everything was very accessible and we saw several other wheelchairs (adults) while we were there! The drive home was excruciatingly long, I was exhausted from our early morning and traffic was awful, so it took us 2hrs to get home, but it was still worth it. We had a great time and it was fun to get out of our normal routine! We're definitely going to try to get out and do more, especially before the weather gets too crazy hot! So it was a very fun, very tiring day!! I need some rest!
Thursday, March 26, 2015
Reagan slept well last night and actually slept in a little this morning! We thought maybe she was going to have a sleepy day, but she did wake up eventually and she was VERY serious. No smiles, very tense...but stable. OT came for a morning session and she did OK. She was falling asleep a little toward the end of her session! We did get an exciting delivery during OT. The Freedom Concepts rep came by and dropped off a Chill-out chair for her to try. I love that we're going to get to use it for a week or so and really get an idea of how it works for her (since it is a ridiculously expensive investment...like most special needs equipment). We put her in it and she just couldn't seem to get quite comfortable enough to doze off in it. She would close her eyes and then pop back awake over and over again. Finally her nurse moved her to her to her bean bag chair and she fell fast asleep (and managed to miss PT). We're just going to have to see how she does in it over the next week. The one we have is the "basic" model, so it doesn't have the memory foam, which will make it even more comfortable. But I think this should give us a good alternate place to put her on her bad days when she needs more support but maybe a little more comfort than her tomato chair provides. We'll see. The only thing I don't like is that it does not come with an option for a harness. I honestly don't think she could get out of it, because it has higher sides than her tomato chair, but I'd like that additional security! Tonight she's been a little more laid back and not as tense. Hoping for a good day tomorrow...thinking we may go do something fun since brother will be off from school because of his dental work in the morning!
It took a lot of extra cushions to get her just right (and she was still too restless to fall/stay asleep)!
Wednesday, March 25, 2015
Reagan woke up a little early today...right around 4:30am! I covered her up but I don't think she ever went back to sleep! I moved her to her chair where she was content to just chill. She has been good today but not particularly happy/smiley. Pretty easy going, we thought about trying to do the photoshoot today, but in the end she just wasn't smiley enough and those hands still want to go in the mouth! She did have a busy morning of therapy though, speech at 10, which she was just not that into. Then PT, which she did fine with but helped us finalize our decision that she just wasn't exactly where we would want her to be for a photoshoot. She had a pretty laid back afternoon. Today was my niece's birthday so we all went to dinner at her favorite mexican restaurant. Reagan got a little overexcited/overstimulated when we first got there, but she was fine after we put on her noise canceling headphones. We had a good dinner (missed our meeting with Make a Wish...totally forgot they were coming tonight) and then came home and just took it easy. My girl fell asleep in my arms so I'm hoping she'll sleep well tonight!
Ryan was a mess!!
Tuesday, March 24, 2015
Reagan was pretty good today. Still into her hands a lot in the morning, but settled down with that as the day went on! She had OT and school today and did really well with both! (She was still slightly sensitive at times, especially this morning, she didn't like us talking amongst ourselves, but did fine when we were talking directly to her!) During OT she got up into her stander and during school (her teacher was also accompanied by her vision teacher and speech therapist) she worked on her eyegaze device! Tonight she's just been SO precious, wide eyed and smiley...we're thinking of trying to reschedule our photoshoot for tomorrow if she keeps this up! Such a darling girl!
Monday, March 23, 2015
Reagan had another pretty good day. Very similar to yesterday. Still a little sensitive at times, VERY into her hands (wore at least one arm restraint most of the day), and maybe a little more spitty. She had several therapies today. During speech this morning, she was still pretty sensitive/on edge. As the day went on though, she mellowed out a bit. She seemed to do fine with PT and OT this afternoon. Definitely still having cold hands and feet, but otherwise seems good. I'm still hoping she'll mellow out and have some laid back days this week, where she's happy but her body is calm.
Sunday, March 22, 2015
Reagan had a pretty good day today. She's still a little sensitive and very crunchy (her hands are either in her mouth or her hair at all times). Not really an optimal day for pictures. I decided to go ahead and cancel our family photoshoot we've had scheduled, because we would have been fighting Reagan nonstop with those crazy hands! The photographer was very accommodating and we're going to try to do it on one of Reagan's calm relaxed and smiley days. Since we had no other plans, we decided to finally take a trip into Austin to see the Bats at the Congress Ave bridge! We got there right around 6:30 and parked at the Austin American Statesman right beside the viewing area. We sat in the car for a bit (because it was a little stinky) and finally got Reagan out of the car around 7:10pm. The bats started flying out maybe 5min later and then continued to do so off and on til about 7:45pm. It was pretty neat to watch and I'm glad we didn't get pooed on! Definitely worth doing and everyone was surprisingly well behaved (except for Ryan wanting to run and jump in the water)!
Saturday, March 21, 2015
Today is Reagan's birthday! She slept well last night (in her chair) and woke up this morning a little kooky, but much improved! She was still a little groggy and took a nice little nap but woke up right before the party. She's been very crunchy and into her hands/hair, so not the easiest to take pictures of. It was a beautiful party! Frozen to the max! Unfortunately, only about half of the people that RSVP'd showed up (only family...not a single friend or neighbor), so that was a disappointing! It was A LOT of work to have half of your guest list not show. Not happy. Oh well, their loss! Reagan was a princess in her Elsa dress and Ryan got so wound up on sugar, I thought we'd never get him to sleep! A good time was had by all and Reagan made it through without a problem! Tonight she's been coughing a lot because of the congestion/runny nose. It's driving her nuts! I gave her mucinex and used saline and sucked out her nose, but it's definitely causing her some discomfort! Hoping she can get some rest tonight and wake up feeling much better tomorrow (we have a family photoshoot planned for the afternoon, so we'll have to see how she's doing, I'd prefer doing it when she's not so kooky/crunchy)!
Friday, March 20, 2015
Today was a definite BAD day. Reagan slept in this morning, which was the first red flag. She kept sleeping until right around noon when she woke up crying with a super leaky diaper. The first dose of oxycodone worked very well and she slept well for 4+hrs. When she woke back up, she was still crying. She seemed to be having waves of pain that were really bothering her. Unfortunately the next time we gave her oxycodone, it didn't work nearly as well. It took longer to work and it didn't last nearly as long. She was extra gunky/coughy after all of the crying and kept coughing even in her sleep. I have no idea what this means for her birthday/party tomorrow. We're already having major issues with the weather (and had to cancel the bounce house on account of rain), hoping she can pull through and have a decent day tomorrow! (Ryan had a dentist appt today, and a haircut, talk about a traumatic day! He's got a cavity so next Friday we'll be doing that! Ugh!)
Thursday, March 19, 2015
Not sure how well Reagan slept last night. She's been pretty restless. She did fall back asleep this morning...just in time to miss PT. She wasn't out long (just long enough to miss PT), but she did wake up in time for OT. She was a little kooky, but good kooky. Laughy kooky. We tried to keep things calm the rest of the night, as not to upset her. She dozed off around 9pm on her own. Hoping she can finally get some good sleep!
Tuesday, March 17, 2015
Reagan slept well last night and woke up with a fuss around 7am. I was worried she was upset, but I think she just wanted someone to come and get her!! She's had a good day today. No school this week (spring break) so not a lot going on, but she did have OT. She's still been a little congested, but mucinex seemed to help a little. Hoping she can get over this congestion issue. Not sure where it came from. Is it something brother passed on to her last week when he was sick? Not sure, but he never had anything more than a few sneezes!
Monday, March 16, 2015
Reagan slept well last night and woke up this morning with a poo! That definitely set the tone for the day, as it was a THREE poo day! She's been good today, just serious and still wanting her hands in her mouth. Only one therapy today, speech. She didn't seem to mind being interacted with today and could tolerate different positions a lot better. She's still congested, but not as gunky. No fever with her though, so that's good. Ryan only had a fever the first day and ever since then has seemed fine. He does have the occasional cough (usually when laying in bed), but otherwise you'd never know he was sick! Hoping Reagan can pull it together and have a GREAT weekend, since her birthday (and party) is Saturday and we've got a family photoshoot scheduled for Sunday! Big weekend! Rain, rain, stay away!!!
Sunday, March 15, 2015
Ryan woke up at a normal time this morning, as did Reagan. We kept Reagan upstairs this morning just to see how Ryan was doing and if anything at this point Reagan seems more sick than Ryan does. She's still very congested and it's driving her crazy! You can tell it's running down the back of her throat, every now and then she'll choke on it! Poor thing. I've used saline and suction a couple times today, but she really hates it! Not sure what else I can do to help her! She's been more stressed and bitey today so we've had to keep arm restraints on both arms most of the day. She prefers to be left alone and seems fairly calm, but the second you talk to her or move her to change her diaper, she gets increasing agitated and wants to bite! Hoping she gets some sleep tonight and wakes up feeling much better tomorrow!!
|Loves to lay at his sister's feet and get kicked! Crazy boy!|
Saturday, March 14, 2015
It's been quite an interesting day. Reagan slept well last night and woke up right around 8am. She was very still and quiet...and serious. No smiles today. She was a good girl though and kept her hands out of her mouth without too much of a fight as long as I had her weighted blanket over her arms. She fell asleep in her chair around 10:15am and slept most of the day, not waking up til around 5pm. Her sickie brother slept in til NOON! That has seriously never happened. Ever. He did wake up some time around 9 or 10, sat up and talked for a couple minutes, but by the time I could get up and go to get him, he had already fallen back asleep! When he woke up at noon, he seemed perfectly fine. Just slightly warm (99) but otherwise good. He had only ween awake 30min or so when I heard a dripping noise coming from our spare bedroom. I went in to find water dripping out of the fire alarm on the ceiling! Before I could run upstairs to see where the water was coming from, the alarm started going off, triggering all of the alarms in the house to go off!!! Ryan was standing there with his hands over his ears and thankfully Reagan slept through it in her therapy room! Mike was at a golf tournament, so he wasn't going to be much help. I started calling neighbors and eventually found someone who could come over! (Thank God for nice neighbors!) He was able to detach the loud alarm in the living room and then also the flooded one in our spare bedroom, finally stopping the horrendous blaring alarms! The root of the problem? A sink I had turned on in my upstairs bathroom and then completely forgot about (maybe 30min, maybe 2hrs, I can't remember)! Eventually it just couldn't drain as fast as the water was coming out! There was water all over the counter, in the cabinet below, and on the tile up against the counter! Not sure how it got through the ceiling and into the fire alarm, but hoping there wasn't much damage done "internally"! Ugh. Never a dull moment. Reagan has been very congested today. I definitely think she's got a little something from her brother! I've had to suck her nose out several times (which she hates), but every time I've done it today, she has fallen asleep afterward! I guess she's just relieved to finally be able to breathe again! Poor girl! Hoping both kiddos get over this quickly! Please keep them in your prayers!
Friday, March 13, 2015
Reagan did not sleep much at all last night, but she did at least stay in her bed. She was very restless all night. I think she slept a little, but she'd be still for a bit and then next thing we knew she was thrashing around over and over again. It's hard to say how much actual sleep she got, but I am thankful she at least spent the night in her bed without fussing. Today she's been pretty precious! She was a little vocal this morning. Demanding attention, but still super sweet! She only had speech today but did great for that. Then this afternoon we took advantage of the beautiful weather and while brother was sleeping we got Reagan out for a nice bike ride and some swinging! She was such a doll! When Ryan woke up from his nap we made a startling discovery. He was sick! His cheeks were bright red and he had a 101.7 fever. Ugh. He had a bit of a runny nose today and has been giving me a hard time eating, so that's obviously related. He did request a bath tonight and had a blast and felt like a new kid afterward. He still had a fever when I put him to bed, but I just dressed him cooler than usual and I'm hoping he'll sleep it off. We kept Reagan upstairs the rest of the night to keep her away from her sickie brother. I'm praying he can get over this quickly without infecting his sister! Please keep this in your prayers!