Tuesday, June 30, 2015

Super sleepy...again!

Reagan did sleep last night and then just kept sleeping...and sleeping...and sleeping! Today was a super sleepy day. She only woke up a couple of times today and never more than a few minutes. Just long enough to get her diaper changed and get her repositioned. I love to see her sleeping so peacefully, but it does make me wonder...what's going on in her body that's making her do this once again? It seemed she went quite a while without having any of the sleep all day sort of days and then now she's back to having them at least once a week. Strange. We also noticed today that the stinky pees are back! So assuming that's still the case tomorrow, we may be running in to to the pedi's office to get her cathed and finally get those urine labs her geneticist wanted (as well as check for a UTI...although she has had no other symptoms). The only thing we can correlate with these stinky pees, they seem to have become more common since adding the extra pedialyte. Not sure if this is at all related, or if it's just by chance. Hopefully we'll get some answers from the urinalysis. Hoping for a more awake/good day for my girl tomorrow!

Monday, June 29, 2015

Long night and not so good day

Reagan was up nearly the entire night last night (and so was I). Nothing was helping settle her down. I definitely think her tummy was hurting her. It was such a looooooooong night! She'd settle down when I was in there with her, but otherwise she'd fuss and moan. Unfortunately, today hasn't been much better. This morning she was getting increasingly tense again so her nurse gave her oxycodone. That helped her to relax and sleep a little. She slept through all of her therapies today...missing speech, PT, and OT! She did wake up once crying. Not good (we started her back on pedialyte today). This afternoon she finally seemed to take a turn for the better and she was more awake and we actually saw some smiles. Getting some gas out and a leg rub from mommy seemed to do the trick (her legs were SO tense I rubbed some panaway essential oil on them). Tonight she seems very off neurologically. Super tense/stiff, dozing off but then startling back awake and stiffening out, sweating her back so wet I had to change her pjs, maybe a slight hint of bad day smell, and still super sensitive (almost cried a few times because of us talking). Hoping some how, some way she can get sleep tonight. I've  been running on fumes all day, I definitely can't handle another night like last night.

Sunday, June 28, 2015

More tense

Reagan didn't sleep very well last night. She was pretty restless, so I'm not sure how much sleep she actually got, but at least she was in her bed! Today she's been pretty similar to previous days. Still tense, kooky/vocal, but she's also some crazy laughs today. Not a lot going on today. Mike planted a transplanted peach tree and then played in a golf tournament. My mom and I hung out with the kiddos all day. Reagan was definitely a little more tense today and there were a few times that she almost got too excited. Her nose is also more red. We spent a lot of the day trying to keep her hands away from her face! Tonight our night nurse came and worked so that Mike and I could go out with my friend from college and her husband who were in from Houston. We had a nice dinner and stayed out til all hours of the night (11:15pm a new record)! Reagan was dozing off just before we got home but had popped back awake. She also seemed to be getting more and more agitated. I just gave her a dose of oxycodone, but so far it's not helping. Looking like a long night for me and my girl!

Saturday, June 27, 2015

Still vocal/kooky

This weekend did not get off to a good start! First thing this morning we get a call from Reagan's Saturday nurse to say that she's not coming in today because it's raining! That's right...raining! I mean sure, you'll be late because it's storming and your afraid to drive, but not coming in at all?!?! Ugh. Not happy. Thankfully Grandma was here and both kiddos were pretty well behaved. Reagan was still very vocal and kooky today. She's putting her hands in her mouth, not a ton, but obviously enough to rub her nose raw. This afternoon Reagan hung out with Grandma while we went to a pool party for our Bible study. I wanted to take her but I'm so glad I didn't...I was eaten alive by mosquitoes! She's so sensitive to mosquito bites, it would've been a major disaster! She had fun with Grandma and Ryan had a blast swimming in a crowded pool! Good times.  Reagan was fighting going to sleep tonight but she finally went down. Hoping she stays asleep but I'm not super confident.

Friday, June 26, 2015

Talkative girl

Reagan had a good day today. Slept well last night and woke up super sweet. She's been very vocal/talkative today. Less high pitched squeals and more just overall nonstop vocal. Definitely still wanting undivided attention! And no more stinky pees (so we're waiting on the urinalysis til next week). She had a busy morning, she had a joint session with speech and her teacher from school. Then she had PT. She wasn't wanting to work too much, but she had some good moments here and there. This afternoon and tonight she's been wide eyed and precious. Super sweet and in good spirits. When it was time for bed she was all yawns but just kept talking and talking fighting sleep. She eventually dozed off in her bed. Hoping she can sleep well and have a great weekend!

Thursday, June 25, 2015

She's awake and spunky!

Reagan finally woke up! She's been a spunky girl today! Well rested and ready to go! She only had one therapy, OT, but she did well with that. Sat up in her bumbo chair (childrite chair), spent some time in her stander, had a couple of poos on her own, you know, routine therapy session! She's been really funny today, making this high pitched squeal any time she wants attention! And when I say high pitched, I mean break glass sort squeal! She's a character! Lots of energy after all of that sleep. Pee still a little stinky...we're in talks with the pediatrician to see about getting it analyzed. Trying to get in touch with the metabolic dr to make sure we get everything he wanted on the order. So, if the pee is still stinky tomorrow, we'll take her in and get a urine sample. Praying my kooky girl can get some sleep tonight! 
Ryan and I took a quick 15min trip to the aquarium today. Here he is at the ray touch tank...his favorite!

Wednesday, June 24, 2015

Sweet dreams

Reagan slept all day today. Literally ALL DAY! She only opened her eyes maybe twice or so and both times only kept them open maybe 10min. This girl was TIRED! She's still having stinky pees, but on a good note, while sleeping she's no longer having the crazy temperature regulation issues. No more sweating her clothes wet. Hoping she can sleep off whatever it is that's "off" in her body right now. Sweet dreams my princess!