Thursday, October 8, 2015

Vocal, a little sensitive, and loose but tight (if that makes sense)

Reagan slept well last night and woke up sweet this morning. Although good today, she's been sensitive and very vocal. She was doing this crazy thing where she'd take a big gasp of breath and then squeal...I think she was freaking her nurse out a little. She had two therapies today, PT and OT. During PT we got her up in the stander for a bit (12min), but her legs were turning bright red and both the stander and the AFOs just aren't cutting it right now so we decided to cut it short. She's got an appt next week to get new AFOs. Her tone has also increased so we're talking to her PM&R doctor about possibly trying botox again in her lower legs. It's just really hard to get her weight bearing right now...her heels never even touch the foot plate when in her stander (it's like she's standing on her toes). Not good. This afternoon she had OT and that went a little more smoothly. Yesterday and today her therapist was able to get in some really good stretching because of her tone being decreased (in her upper body at least). She's very concerned about her getting curvature in her spine during these years when growth spurts are likely so we just really need to watch her closely and try to keep her sitting straight in her tomato chair and put her in her wheel chair as much as possible too! Hoping we can get her to sleep tonight. She keeps dozing off and then popping back awake the second I move!

Wednesday, October 7, 2015

New tomato chair

Reagan slept well again last night and woke up right around 8am. She was super sweet and smiley and STILL. She's been very still and calm today. Her body is just so much more relaxed. She's continued to be pretty vocal, but sweet vocal, not agitated vocal. She only had one therapy today, speech this morning but she did really well with that. It was just an easy going, vocal sort of day. Still having a lot of gas...not sure what's going on in that tummy of hers! We got good news last week that her tomato chair that tore on our trip to Hawaii was still under warranty and they are sending us a replacement! I just can't say enough good stuff about this company! I mean, we LOVE her special tomato soft touch sitters  so much we have one upstairs, one downstairs, and one we take with us every where we go! We even got our last one covered by insurance (which was super surprising)!! They are just so much better than the tumbleforms chairs and so much more comfortable to sit in than a wheelchair! If you're thinking of getting one, Adaptive Mall seems to have the best price.

Tuesday, October 6, 2015

Another busy day

Reagan slept well last night and woke up this morning in a good mood. She had an early morning session of PT and did fairly well with it.Then she had an appointment with Dental just as a sort of pre-op visit before her dental cleaning/x-rays under anesthesia at the end of this month. We got there right at 11 (her appt was at 11) and signed in. And we waited. People came and went. Finally around 11:30 we asked them what was going on and apparently we had signed in on the wrong side of the office. They told the other side, but then whoever they told forgot. So there we sat. I wasn't too happy about it and let them know it. They were very quick to get us back and they went through the check up appt very quickly. We were on our way by noon and had just enough time to stop and have a birthday lunch at Kerbey Lane for Reagan's nurse! We got home just before Reagan's OT arrived and then I had to go pick up Ryan. Reagan had a great session with OT, got some really good stretching in (she was more loose today than yesterday). Afterward, she had school/speech and even though she started out a little vocal/kooky, she settled down and had a really good session. She's been a little kooky off and on today and we again think her tummy is probably to blame. Lots and lots of gas today. Thankfully, it never escalated to the point that it did yesterday and she's remained pretty calm most of the day today. Tonight she even came outside and hung out in the culdesac for National Night Out! I got in some good snuggles/cuddles just before bedtime and she fell asleep on me and was laughing in her sleep. This is something I don't think I've ever witnessed before...her lips were twitching into a smile and her body was heaving as if she was laughing but she was hardly making a was very strange! Daddy transferred her to bed without any problems, so hopefully she can get another good night's sleep tonight!

Monday, October 5, 2015


Reagan had a busy day of therapies today...speech first thing this morning, OT this afternoon, and then school/vision therapy. She was very vocal and not really into speech and school/vision but she was great for OT and got some good stretching in (which is good because she's really tight especially on her left side). It's funny because I think sometimes she gets super vocal in order to scare off her therapists and get out of working! Today it definitely worked with school/vision! We do think her tummy has been giving her some issues though because she's been having a ton of gas! She was a little more on edge this afternoon/tonight but she held it together and had a pretty good day.

Sunday, October 4, 2015

Sleepy with tears

Reagan slept last night and then just continued sleeping most of the day today. I changed her diaper around noon and she never moved a muscle. It's so nice to see her sleeping so peacefully. She'd stretch here and there but stayed fast asleep! Around 3:45pm I had to move her from her bed to change her because there was a major leakage. I moved her to her therapy room, changed her diaper, and pants and she never even opened her eyes! It wasn't until around 5pm that she finally started waking up. She was a little restless and then woke up very startled and wide eyed. She kept escalating and was eventually letting out these blood curdling screams. I gave her a dose of oxycodone which seemed to help. She never actually fell back to sleep, but she was a little more stable and not crying. It was a rough night. She continued to do this off and on. It would come in waves and it was more than just was very unsettling. Poor girl. Hoping she can sleep it off tonight and feel better in the morning!

Saturday, October 3, 2015

Sleepless girl

Reagan did not sleep much last night. She was quiet and I was out cold, so I didn't even realize she was awake. Mike was awake though and tried laying down with her for an hour or so, but she'd doze off for a few minutes and then pop back awake over and over and over. She was still in good spirits though and laid in bed til 7:30am or so when she finally started making some noise! She's had a pretty good day today. She's still tense in her body and her temperature regulation is off, but she's been sweet albeit a little kooky at times. This morning we had two nurses so Mike played in a whiffle ball tournament with our neighbors. I took Ryan out of watch and he surprisingly did really well. I thought he would want to go home right away, but he made it through both games (that they lost). Today was the last day of one of our beloved nurses! She's moving back to Houston and she will definitely be missed! She's our night/weekend fill-in nurse so we are definitely going to be feeling this loss! We had a new nurse here orienting today with her, who we were hoping could fill in the gaps in our schedule, but unfortunately she had some major issues lifting Reagan. I guess it's back to the drawing board. :( My girl had some crazy laughs this morning and more again tonight. She was a little more mellow midday. She kept looking like she was going to doze off but never did. In fact, tonight she was still wide awake at midnight. Clonidine and cuddling with Daddy finally did her in and she's asleep. Hoping she can finally get some rest...sweet girl!

Friday, October 2, 2015

A bit off but still sweet

It's been another good day for Reagan. She was up early but good. A little more still today, but still very smiley. She had speech this morning and did well with that, although she still seemed a bit sleepy. Not a lot going on today. She did have school this afternoon and did very well with that (but was really wanting those hands in the mouth). Reagan does something her nurse calls the three finger salute...she puts her first three fingers in her mouth and kinda pulls down on her tongue/lower jaw. She sometimes also fish hooks herself with those fingers...especially when you try to pull them out! Her temp regulation is still a bit off and she's a little sweaty with cold hands/feet. We kept her on the floor some of this afternoon and most of the night. Her body definitely seems to be getting a little more tense and she's having a lot of clonus in her feet. I decided to go ahead and start pedialyte tonight...just in case. She fell asleep on the floor tonight but woke up when we moved her to bed.  Hoping she can fall back to sleep and pull through and give us some more good days!