Sunday, March 1, 2015

Lazy Sunday

Reagan had a super laid back day today. Reagan slept last night...we all did! We had a lazy sort of Sunday today (still no weekend nurse). Reagan was very relaxed, smiley, and sweet. She's still a little tense in her body/crunchy and into her hands, so we're having to keep her arm restraint on...that cut on her finger still looks awful. We think we've figured out how she did it. She puts her hands in her hair a lot. And she grabs handfuls of hair and pulls. With her hair the length it is now (longer than normal) it tends to get twisted around her fingers...we're pretty sure that's what cut into her knuckle causing the crack. Well, that and the fact that she's constantly putting that hand in her mouth and it's damp making her skin more fragile. Ugh. I guess that means it's time for another hair cut. We're doing our best to keep it out of her mouth and her hair for now. She's been so super sweet today. Hoping for a good week ahead.

Saturday, February 28, 2015

Glad to be home!

Reagan was up A LOT last night. In fact, the only time I actually saw her sleeping was from 12-1am! One hour! She was also fussing a lot and would not just lay in bed...I had to keep jumping up (off of my extremely uncomfortable sofa bed) to console her. It was NOT a fun night (especially considering she had done this same thing, to a lesser extent, the night before)! We made it through though and eventually saw the doctor and got the good news that her EEG looks great! It's obviously still a little slow (because of her developmental delays) but there is no sign of epileptiform activity whatsoever (when she's awake or asleep), so that's always great to hear! Just keep on keeping on. What we're doing is working, so no need to make any changes. We came home around 12:30 and gave her a bath to try to wash some of the gunk out of her hair (we'll be picking that stuff out all week)!! She's been super sweet and wonderful! Love this precious girl! I'm SO looking forward to sleeping in my bed tonight! Just hoping my girl feels the same!

Friday, February 27, 2015

"Routine" 23hr EEG

Last night was a looooong night! Reagan would not sleep! She didn't react well to clonidine and refused to lay in bed. We moved her back to her chair where she did eventually doze off. That was short lived though and she was back awake in no time...moaning. She didn't just want company, she wanted to be held! I'd get up and try to console her in her chair...nothing. Still very vocal and upset.  But when I picked her up, she'd instantly fall asleep! Unfortunately, the second I'd put her back down, she'd wake up! Very frustrating. So needless to say, neither of us got much sleep last night and we've had a busy day today. This morning we came in to the hospital just before 10am for Reagan's annual 23hr EEG. They didn't hook her up til 12:30 or so, but they were very accommodating and let her stay in her chair the whole time and we miraculously avoided a major meltdown (when she's already sensitive, that compressed air they use typically sends her right over the edge)! She's been really good all day actually. I've had to keep her left arm restraint on, because she wants to either grab her head or put her hand in her mouth (and I noticed this morning a big crack right along the knuckle of one of her fingers from putting it in her mouth too much)! Of course, now she's just putting her right hand in her mouth too much! She's been such a trouper all day. Still a little kooky, but keeping it in check. It's 11pm right now and she's still going strong (even after clonidine). Hoping she'll fall asleep soon! I'm exhausted! 

Thursday, February 26, 2015

Still kooky

Reagan had another very vocal/kooky sort of day today. She woke up right around 6:30am and then would not go back to sleep and definitely preferred having someone by her side. So I reluctantly got up and kept her company until her nurse got her at 8. She had OT this morning and she did really well with it. Then during PT she got increasingly vocal/kooky, but still got some work done. And then this afternoon, well, she was just not having school/vision (for the second week in a row)! She got very agitated/vocal and basically let us know, she was NOT in the mood for it! Thankfully her teacher and vision teacher were able to take the time to look more closely at her eyegaze device so not all was lost. Tomorrow is going to be a crazy day. I'm praying Reagan will be more calm tomorrow for her 23hr EEG, especially since in general she's not a fan of the whole process of putting the electrodes on. We have to be there around 10am and they'll probably start the process of getting her wired up around 11. Please keep her in your prayers! Ryan will get to spend the day with Grandpa and then Mike will come home with him for the night. Then Saturday morning Mike will come back to pick us up! Hoping for an easy going CALM day for my girl!


Wednesday, February 25, 2015

Vocal and tense

Reagan slept in again this morning. Last night, not long after we transferred her from her bean bag chair to her bed, she made a few moany/fussy noises, but then stayed asleep. This morning we peeked in at her and she was smiling in her sleep. She woke up a little kooky, but still smiling. Very crunchy and tense in her body today. Also VERY vocal. Lots of vocalizations all day today...kooky vocalizations. But she's also been a little sleepy. This morning she actually dozed off in her wheelchair after about 20min of speech therapy! Her nurse transferred her to her bean bag chair where she continued sleeping until right around noon when we had to get her ready to leave for her already rescheduled orthotic appt. She got a little kooky/vocal in the car and at the appointment, but she was OK. We got some new interesting elbow and knee immobilizers (the elbow immobilizers to use on bad days to keep her from biting her hands and the knee immobilizers to work on standing without having to put her in her stander)! They are very different from her old ones and I'm curious to see how we like them. They are made out of foam and stretchy (ace bandage-like) straps so they are a lot thinner and lightweight than her old canvas ones (pedi-wraps), but they have very rigid metal stays in them and even extra ones that you can add onto them. Sounds promising...we'll see. We, unfortunately, got a chance to try them out tonight. She's been super crazy vocal biting her hands all night. Her tummy is giving her major issues. I can hear it gurgling up a storm and she's having machine gun gas, poor thing, she must be miserable! Not sure where we're headed but hoping she's stable by Friday morning for her 24hr EEG! 

Tuesday, February 24, 2015

Sleeping beauty

Reagan slept in a little this morning, but when she woke, she was still sweet and smiley. Still a little sensitive (slightly kooky), but OK. No therapies this morning, so she just took it easy. Maybe a little too easy. She was looking a little sleepy all morning and then finally right around noon she dozed back off. And she was OUT. She just kept sleeping! We had to cancel both OT and school/vision. She was out. Finally around 4:30pm her nurse changed her diaper and she woke up a little. We pretty much forced her awake because she needed a bath. We were able to give her a bath and get her changed and then she dozed back off and slept the rest of the night. Such a sweet girl. She looks like a little sleeping beauty! (I wanted to take a picture but I was afraid I'd wake her up!) Instead I'll leave you with a pic of Ryan forcing us into his tent (again)! He got Grandpa in it this afternoon and then us tonight!



It's tight in there! Not big enough for one adult, let alone two adults AND a toddler!

Monday, February 23, 2015

Sweet but slightly sensitive

Reagan slept well again last night and woke up still sweet and smiley. Definitely a little less relaxed today though. There were a couple instances where she almost lost it! She did fine with speech this morning and then we were about to brave the cold and go to her orthotic appointment when just talking to her nurse completely set her off! Her eyes got all red and filled with tears! No actual crying, but close. So we canceled the appt and just stayed in (it was too cold to drag her out anyway). She did have OT after that and did fine with that as well. Then tonight just as her nurse was leaving, I don't know if it was the talking or what, but she almost cried again! Eyes filled with tears and she looked all sad! I don't know what that was all about, but she was fine for the rest of the night. Sweet and cuddly. Hoping for another good night's sleep tonight and smiles again tomorrow!