Friday, December 6, 2013
Reagan did not sleep much last night, and the crying continued, so let's just say it was a miserable night for the two of us! She'd doze off for 30min to an hour only to wake back up crying once more! She did NOT want to be held, as she demonstrated by kicking, flailing, and biting when I would pick her up! It literally took all I had to just hang onto her! It's amazing the strength this little girl has! So needless to say, with that kind of night she did not wake up well rested and feeling better! It's been another rotten day for my girl! She's sleeping less than she did yesterday (unfortunately). The chorea is out of control (she can't stop moving for even a second), she's grinding her teeth, and she's been moaning and had this high pitched whine all day. Plus the occasional full blown cry...let me tell you, it's no party over here! Speech came by and actually got her to calm down a little by squeezing things she would put in front of her! OT came too and was able to soothe her enough with steady pressure to her tummy to get her to fall asleep! It didn't last long, but every bit of rest she can get is appreciated. She's definitely better today than yesterday, but not by much! Praying for sleep and a huge turnaround tomorrow! It really is unbearable to watch her suffer like this!
Thursday, December 5, 2013
It's been an AWFUL day for my girl! Just awful! She slept OK, but woke up squirmy and tense. The crying didn't start immediately, I got up with her before 7, but it was clear she was "off". Right around 9:30am she started crying and then never stopped. She cried nearly every waking moment today. Those miserable, gut wrenching cries (turning purple from holding her breath)...nothing soothed her, nothing took the edge off. We tried Imitrex again (the migraine med), and this time we saw no response (even at double the last dose). We finally resorted to Lortab and that helped a little. She'd doze every now and then but an hour was about the longest stretch. It was a loooong day....and night. She actually got a little worse tonight. She was awake for a longer period of time and very upset. Grabbing and pulling at her hair, biting on her hands (and gnashing her teeth together), kicking and flailing nonstop! After fighting her for hours, I gave her a dose of clonidine and she FINALLY dozed off!! Praying she'll stay asleep and wake up much improved tomorrow!!
Today was another surprisingly good day for my girl! She woke up happy once again and we were all very relieved! She was relaxed too, at times to the point where we thought she was going to doze off, but she never did! I guess that's a good thing because she had a busy day of therapy...PT, Speech, & School...and she did really well with everything! We finally got her up in her stander again and she even did great with that (standing in it for over an hour)! It was a busy day, but a good day for my girl. I spent a lot of time in the yard, trying to put more lights out before the cold weather hits tomorrow! It's beginning to look a lot like Christmas! (I LOVE Christmas!!!) Tonight Reagan seemed a little more tense, she was doing the occasional tooth grinding and her body was very rigid. Hoping she can settle down and get some good rest tonight! Tomorrow (and even more so on Friday) it will FEEL at lot more like Christmas!!
Tuesday, December 3, 2013
Reagan slept last night but she was restless. This morning she was really kicking around and squirming in her bed. I'm not sure how well she actually slept. She was doing A LOT of tooth grinding last night (I forgot to mention it in yesterday's post, but she's doing it again now so I just remembered)...it drives me crazy! It really is like nails on a chalkboard! She moves her lower jaw back and forth and grinds her front/side teeth together! Makes me crazy!! Overall today she's definitely been more tense. Still sweet and smiley but very sensitive to sounds and lights. Was not a fan of people talking around her, but OK when talking directly to her! She only had one therapy today, OT, but she did well. Still having issues with her temperature regulation and she's not only refusing to poop but very few pees as well! Tonight she was having little bouts of crazy...something is definitely off with my girl! Hoping she can continue to hold it together. Please keep her in your prayers!
Monday, December 2, 2013
Reagan had another good day today. She was still very crunchy with hands in her hair nonstop! She was also very sweaty...especially on her back (definitely some temperature regulation issues going on)! But she sure was super sweet and smiley! Grandma and I made a run to the outlet mall in San Marcos (with brother) to get a dresser/tables for our master bedroom...so unfortunately we did NOT have time to see Santa today! I don't think it was Reagan's best day for Santa anyway because of the crunching! We might have had a hard time getting her to sit up straight so we could see her beautiful face! And that's very important! She also wasn't a huge fan of people talking around her, so that probably wouldn't have been good in a crowded noisy mall! Hopefully we'll be able to find the PERFECT day to take her and get really good pics like last year's!! Praying for more good days for our girl!
Sunday, December 1, 2013
Reagan slept well again last night and woke up this morning super sweet and smiley again! She was a little more kicky today and very "crunchy" (bending at the waist and keeping her hands up in her hair/mouth)! A little more excitable today, but still super sweet. She also was having some issues sweating her back wet in her chair tonight...but other than that she's had a normal, good day. Still giving us those huge toothy smiles...can't get enough of those! Earlier as I was getting ready to type the blog and I had my laptop on my lap, the stuck her leg out and kicked my laptop screen closed and then flashed me this huge smile! You can't tell me that wasn't purposeful! This girl definitely has some spunk! She's been quite a spunky girl today! Love her! (If we can get another good day tomorrow, we're thinking of venturing out to see Santa! I guess we'll just play it by ear!)
Saturday, November 30, 2013
Reagan slept well last night but woke up around 5:30am. She was quiet, only making the occasional sound, but she was SO precious! Mike got up and laid down with her to get her back to sleep and she was really turning on the cuteness! She finally dozed back off and then continued sleeping...and sleeping...and sleeping! She was still out cold at 2pm when I decided that we had to go in and at least change her diaper! Well, of course that woke her up! She woke happy though, so that's good. She did end up dozing back off for a bit...guess she just wasn't ready to wake up yet! Definitely a sleepy sort of day! She was super smiley and sweet when awake though, so Grandma was really excited to see her doing so well on her birthday (today was Grandma's birthday)! Tonight Grandma and I went shopping and to dinner while Daddy watched both kiddos! Everyone behaved themselves and then Reagan had plenty of Mommy snuggle time before bed! Such a darling girl!