Friday, December 19, 2014
Reagan slept in her bed last night and woke up this morning coughy but smiley (I realllly hope she's not getting sick). She's definitely holding more tension in her body. Very crunchy, hands up in her hair a lot. A lot more kicky. But sleepy! She actually slept off and on most of the day! She missed speech this morning because she was snoozing (which was OK because her therapist needed to work on her eyegaze device anyway), but thankfully that was her only therapy scheduled for today! When she was awake, she was still super smiley and sweet, but definitely more tense than she's been in days. That makes me a little nervous, that and the fact that she's been a full week without any bad days (which is super awesome)! Her last one was last Friday...and it was a BAD one. Hopefully she can continue this good streak! I certainly like the idea of her stringing together more good days again. Not sure what any of this means for Christmas. Hoping she can pull out some good days next week so everyone can enjoy the preciousness that we've been experiencing!
Thursday, December 18, 2014
I don't think Reagan slept much last night...but this morning instead of finding a tense crying girl, I found a super smiley sweet girl! Talk about a nice surprise!! She's been super smiley and darling today. The last several days, while calm, we haven't seen many smiles. Apparently she was saving them up, because she's been all smiles all day! No therapies this morning, but OT and school this afternoon. She did well with both and even spent a while in her stander during OT. I have noticed today (and maybe last night) her hands and feet are cold and her back is sweating a lot (and maybe even a slight "bad day smell"). Tonight she was being beyond precious and sweet! Looking like Cindy Lou Who! So darling. Hoping she gets some sleep tonight.
Wednesday, December 17, 2014
Reagan slept well and woke up super calm again today! Very still, at times looking sleepy, but she never slept. She had PT and Speech today. PT went really well and while her speech therapist was here, the Tobii rep came out to help set up her new device. A couple issues...one of the mounts (the floor mount) is missing and the mount that did come (the wheelchair mount) is completely unassembled and they don't help with that at all (you'd think buying a $15,000 computer from them, they'd assemble the mount right)! We were also having some issues getting all of the stuff her therapist has already set up for her transferred to the new computer, but turns out it was just a bad jump drive! So everything is transferred and we're just using the old floor mount until they figure out what happened to ours! Tonight Reagan was really giving us some issues in the sleep department. After being chill all day, tonight when it was time for bed she was getting agitated. Mike laid down with her but we had to just move her to her chair. It's not looking like a sleeping sort of night tonight. Not sure where she's headed with this...
Tuesday, December 16, 2014
Reagan slept well last night and woke up calm and content again today. Still very serious, but OK. She was a little tense at first, but seemed to relax more as the day went on. She had OT and school (teacher, vision teacher, and school speech therapist). She did surprisingly well with both! This afternoon, her eye gaze device was delivered! So happy to finally have it here...this has been about a year in the making! Tonight Reagan was so precious, I just had to take some pictures of her in front of the Christmas tree! Such a sweet girl!
Monday, December 15, 2014
Reagan slept well last night. She was still asleep when I went for my walk at 5:50am! About 15min into my walk, I get a call from the nursing agency (never a good thing)! Our nurse is sick and running a fever! Ugh. One, that means we we'll be on our own today but two, this is the nurse that was here on Saturday, so I'm praying Reagan didn't pick anything up from her! Thankfully my girl woke up very calm and collected and she's been super laid back all day long. Still a looking a little gaggy (tongue out, spitty, and smacking her lips a lot), gunky in her throat, but no actual retching or throw ups. She had speech this morning and was a little serious but OK. Afterward she was SO close to falling asleep but then it was time for PT! She didn't get a lot done, but she took advantage of her low tone and did some good stretching on her feet and then put her AFOs on! Then this afternoon she had OT and did really well for that. Her tone is low but her head control is still good, so she was able to get her on the floor and do some mat work with her! She's been quite still and zoned out at times, so I'm really wondering what we might have in store tomorrow. Please continue to keep her in your prayers!!
Sunday, December 14, 2014
I was still had to go in to give Reagan medicines after we put her in bed. She was resting peacefully, but she'd occasionally stretch and make some strange faces (kinda gaggy, mouth smacking sort of faces). As far as I know, she slept well last night. But when we went in to check on her this morning, she had rolled over onto her tummy and I could smell formula leaking. She was still asleep, but I turned her over (waking her up), and discovered that formula had leaked all over her bed because of her pushing her button in an awkward position. We picked her up and moved her in to her therapy room, but just the act of picking her up encouraged her to poo! So then we ended up with a huge leaky poo diaper! We decided to just do a bath right then and there! So my girl got all nice and cleaned up first thing this morning and then looked sleepy the rest of the morning but never fell alseep. Then this afternoon, her nurse heard a rumble and thought another poo might be imminent, but then all of a sudden she had a throw up! Ugh. Not happy about that. I don't remember the last time she threw up! She did finally fall asleep afterwards and slept for a little stretch this afternoon. She was a little burpy this afternoon, but never got sick again. Tonight she was very calm and laid back, but her tummy was making some serious noise! I kept hearing it rumble over and over again! I helped her to go potty again (her third of the day), let's just say she's a clencher! She must've felt better afterward though because she dozed off shortly thereafter! Hoping she can still get a good night's sleep tonight with that over active tummy!
Saturday, December 13, 2014
Reagan slept the whole night through and woke up this morning WAY better. Still very tense, but other than a couple of whines, she was pretty calm. She actually mellowed out as the day went on. Thank you God for a quick recovery! Yesterday was brutal, she really deserved a break today! She was so calm that we were even able to bring her out for our culdesac Christmas party! Loud boys and basketball bouncing didn't even bother her! She stayed out until it started getting a little too cool for her and then we brought her back inside. Rudolph the red nosed reindeer and Frosty were on tv, so we got another dose of Christmas before bedtime. Reagan dozed off in her chair around 9pm (a very early bed time for her) and Mike moved her up to her bed. Hoping she can get a good night's sleep tonight and wake up feeling even better tomorrow!