Monday, July 25, 2016

Precious, busy girl

Reagan slept well last night! Finally! She woke up this morning very wet, but happy! She's been super sweet and precious all day today. She had a busy day of therapies. She had speech this morning and did well with that. She also had a make up session of PT and then spent some time in her stander. We were just remarking today how great her head control has been lately. This new stander really doesn't have a head rest that gives her any sort of support to help keep her head up (unlike the i2i headrest on her wheelchair), but she doesn't appear to even need it. It's amazing how far she's come strength wise! She looks so grown up in this stander. We had her in it for a while, moved her back down to sitting to adjust her AFO that was no longer on correctly (it probably needs to be adjusted again), and then put her back up for school! She did great. She performed well for school too! It was a busy day but she really handled it all beautifully! Now hoping for more sleep tonight...

Sunday, July 24, 2016

Super sweet but still not sleeping

Reagan did not sleep much last night, but she was thankfully in much better spirits. I got up and covered her back up around 2am and then moved her to her chair around 3. She never really fell asleep until 5am when I gave her some clonidine. Then she slept for a bit but was awake by the time I got back from my run. She's really turned it around today. She's been super calm and easy going. Very sweet. Super cuddly. And a little congested. Ryan's had a runny nose/cough for days and I've had a sore throat all day today...something is definitely lurking. I don't know if it's just allergies or a cold, but we've all got a little something going around. Mike and I got away for a rare golf outing (the last time I played was years ago) with our neighbors! Lots of fun, but SO hot!!! (Lots of Pokemon on the course to keep it entertaining!) 

Saturday, July 23, 2016

Bad night and day

So it was definitely a rough one last night. Reagan spent the whole night in her chair and there was a lot of fussing and moaning and crying that kept me up most of the night. I kept a fairly regular schedule with her pain meds, but it just didn't seem to be helping at all. This morning I tried ibuprofen and that might have provided a little relief. Today it's been a lot of the same. Periods of crying interspersed with periods of moany/whiney/whimpery discomfort. Pain meds still don't seem to be helping. She's pretty miserable. She's had a couple of huge wet diapers that soaked both her and me, so I was a little concerned about maybe a UTI, but I checked it with our strips and everything looks good. So that shouldn't be the issue. I'm assuming just a regular bad day. Despite having a bath yesterday, I can smell that bad day smell in her hair today. Something is off. Whatever it is. Neither we nor her doctors have been able to figure that out (for years). Finally, this afternoon/tonight she started feeling a little better. She and her brother watched Frozen (his first time to watch the whole movie) and she tolerated it all. Nothing seemed to bother her in the least. Unfortunately for us, she's still not looking sleepy so I have no clue if she'll sleep tonight or not. We're hoping for the best! We're all pretty exhausted! Praying for a better day tomorrow.

Friday, July 22, 2016

Bad afternoon/night

Reagan slept well again last night and woke up still calm (maybe a little more serious) this morning. She had an uneventful morning (no therapies today), but did have one seemingly random burst of tears! It just seemed to come out of no where. Her nurse was in the other room so we thought maybe it was for attention? She calmed down as soon as Megan picked her up. Unfortunately that was not the last of the tears. Sometime between 3-4 they started back up again and this time they were not going away. We gave her some oxycodone, but she kept crying. An hour or so later, we tried clonidine. Maybe that helped. A little anyway. She did stop crying but was still very whimpery. Definitely something was bothering her. Maybe in the tummy department? She did have some gas off and on, but it's hard to tell if that's exactly it is that's bothering her. Tonight I stayed upstairs with her, to try to minimize aggravation. She had periods where she seemed fine and periods where she would cry nonstop. She had been calm for a nice long period right before bedtime so I thought maybe, just maybe, she'd be OK to lay in her bed. Nope. That didn't happen. We moved her back to her chair and she went back into another long stretch of crying. Ugh. I'm afraid it's gonna be a long night (it's already been a long night)...

Sitting in a similar orientation you can really see the difference! 
Wow! So grown up!

OMG! He's about 16mo here! So little!

Thursday, July 21, 2016

Super sweet and calm

Reagan slept well last night and woke up super sweet and calm again today. She had PT and got up in her stander for the first time today since her Botox last week, and although she looked good, there was still a lot of redness and her therapist is unsure if there's any improvement as a result of the Botox. Ugh. That's discouraging because we felt the last time there were definitely some changes...some better, some worse, but at least we thought it was working on her. Now we're not so sure. This afternoon she had OT and she did well for that too. Such a sweet girl. Tonight I was able to get away for bunco and Mike watched the kids. It was a good night for it as both kiddos were in good moods. That's not always the case. Hoping for more good days for my girl!

Soooo grown up!!

All of that tone back then enabled her to stand up easily but also it kept those little hands fisted all of the time! 

Wednesday, July 20, 2016

Still but sweet

Reagan slept well again last night and woke up at a more normal time this morning. She woke up very calm, not super smiley but sweet. She had speech this morning and worked on her eyegaze computer and ate some food. She's been a little loosey goosey with super still arms, which is good but not for using the switch. Then this afternoon she had school. I figured it wouldn't be the best fine motor day, but her teacher said that she actually did really well with grasping, it was just harder for her to move her entire arm. She was very attentive though, so it was a good day for school. Overall it's been a good day for my sweet, calm girl. Tonight I even got some good snuggles and laughs. Love this girl.

Tuesday, July 19, 2016


My sleeping beauty finally awoke! She slept the entire night and then even kept sleeping this morning until around 11am! That was 36hrs of uninterrupted sleep! She must have really needed it! And she got some more today as well. She was awake and good for a few hours and then dozed back off this afternoon. She slept for a few more hours and then was awake until bedtime (an early bedtime). She's been very calm and laid back today. Very serene. Hopefully all of that rest has been good for her and she has a great rest of the week!