Tuesday, July 28, 2015

Awake and spunky

Our girl finally woke up today and she seems to be doing much better! Her temperature regulation issues have finally resolved (as they usually do after a sleepy day) and she's back to having 8 wet diapers on her own...so that's really good news! We did notice she's got a big mosquito bite on her right cheek...must have gotten her while she was swimming Sunday and we just didn't notice it because she slept all day yesterday! She's also had the hiccups multiple times today. We're not sure if it's reflux related or not but she does sound a little more wet in the throat. She's been a little vocal/kooky (easily provoked by talking/or her brother) but otherwise sweet and precious. We had an routine checkup this morning with the endocrinologist. Ryan was a mad man and boy was I missing having my Dad here to babysit so we don't have to take him to appts! We spoke again about puberty (we're going to have to bring her back in for early morning labs so they can check her hormone levels and a bone age scan). This doctor is pretty adamant about not stopping it. She said the benefit to her bones outweigh any perceived inconvenience on our part. When kids are non-mobile and don't stand or bear weight through their bones, their bones don't get very strong and many kids will have such brittle bones, they'll suffer breaks just from being lifted or bumping something! Not good. So even though I totally understand her justification...it's just not something any of us want to deal with. So I guess for now, we'll put it on the back burner and address it when we have to. But from what I can tell is there really are NO good options. After we got back home from Reagan's appt, she had a huge poo on her own and we decided to just clean her up and put her straight into the tub (she was already due for a bath)! So we were able to get a bath in before OT and then during OT...another poo!!! Of course, now that she's clean! She was good though and we're happy she got that out of her system! Tonight we had our neighbors over for some grilling and swimming. I stayed in with Reagan most of the time because it's SO HOT outside (especially in the afternoon)! Ryan swam until it was dark and then we still had to drag him out of the pool! After I got Ryan to bed, I held Reagan and snuggled with her until we both fell asleep! Daddy carried her to bed where she, of course, immediately started getting super vocal so he had to lay down with her until she fell back to sleep. Another night of us not getting to bed til after midnight (and I've got to run at 5:45am)...oh sleep deprivation!
Not very photogenic today!
Trouble!

Monday, July 27, 2015

Super sleepy

Reagan fell asleep last night after our busy day and she was OUT! She slept the whole night through and the entire day today! Thankfully she did finally start having wet diapers on her own, but she waited until almost noon to have her first one (and then had two more later). She never woke up for more than a few seconds all day. She'd toss and turn and stretch and make some noises (maybe even crack her eyes for a second or two), but overall she was just out cold. She never leaked through and seemed comfortable as is, so we never even moved her from her bed. Not a very exciting day, but obviously she got some much needed sleep, so that makes us happy. Hoping she'll wake up on the right side of the bed tomorrow and give us some smiles!

Sunday, July 26, 2015

Busy Sunday

I put Reagan to bed last night hoping she would sleep but also hoping maybe she would wake up in time to go for a run. I signed us up to do a virtual 5k for Ainsley's Angels (their sunset 5k was yesterday) in honor of Gwendolyn and Reagan's I run 4 runner Julie. When I went in to check on her at 5:30am, she was asleep but stretching with her fingers tangled up in her hair. As I untangled them, she woke up. Maybe she would've gone back to sleep, but I took her downstairs and put her in her jogging stroller. I got ready and we were out the door by 6. My running partner slept in a few minutes so we didn't get started til 6:15 or so. We walked 5min or so and then started running (my mom followed us in her car and yelled for us along the way). It's SO much harder pushing a stroller (and even more difficult pushing this giant jogging stroller)! I pushed the first 1.6 miles and my partner took over the next mile. Thank God I had some help because it was a challenge (you don't realize how much momentum you get from your arms while running until you can't use them)! I pushed the last 0.6 mile and then we were done! We did it! We finished in less than 40min so while not a good time for us, it was respectable all things considered. Reagan was a perfect angel and didn't make a peep the whole time! I think she enjoyed it. She never fell back asleep, but she was content nonetheless. She had a pretty good day today. She's still been tense in her body but pretty easy going. We decided to take a road trip driving around the lake and going to lunch in Marble Falls. Ryan was cracking us up on the drive singing this crazy rendition of the ABC's. He's such a ham! Reagan dozed off for a bit on the drive over there, but she woke up when we took her out to go eat lunch. It was a fun trip but good to be home and stretch our legs. Tonight we decided to take both kiddos swimming since the water was so warm. Reagan was a bit tense and serious, but every now and then she'd crack a smile. I know the water had to feel good to her. She was holding her pees again all day today (only went 3x and only when I used the water trick). Hoping she can get back on track with that soon. Tonight she's looking pretty sleepy so I think we might be in for some sleepy days. I know she needs it!



video



Saturday, July 25, 2015

Neurologic sensitivity

Reagan's sleep last night was still iffy. She wasn't as vocal as the night before, but I still think she was up most of the night. She's had an OK day today. Still very tense in her body and her temperature regulation is way off (super sweaty back and cold feet). Her nurse kept her on the floor most of the day to try to keep her from sweating through her shirts! She's been in good spirits but sensitive. More sensitive to loud noises and wind than talking or music. Her nurse even watched Into the Woods with her so that mad it obvious that she wasn't sensitive to music like she normally is. It's definitely a weird sort of neurologic sensitivity. She quints her eyes a lot and jumps out of her skin at the slightest sudden sound. She had tons of gas today and continued to hold her pees (unless we used the water trick). She definitely seemed to be having some tummy pains but that could've been a combination of both the gas and the pee. Tonight she got in a lot of snuggling with Grandma and mommy! We really wanted to try to get her in the pool tonight but she was just too sensitive to try...maybe tomorrow! Hoping for some solid sleep tonight for my girl! We learned tonight of the passing of sweet Gwendolyn. I can't even believe it. I've followed Gwendolyn's journey with SMA for probably 5+yrs now and my heart is breaking for her family. Please keep them in your prayers!

Friday, July 24, 2015

Sick of tense

Reagan is still not sleeping! Ugh. She's very vocal and kooky and last night was no different. Eventually I had to turn her monitor down a bit so I could sleep. Then Mike woke me up around 4am and said he thought he heard her pump beeping! Well, apparently it had been beeping for a while and neither of us heard it because the monitor was turned down more than usual. So she started the day a little behind in her total fluid volume, and being so sensitive to that, now she's not wanting to pee! The only times we got pees today were they times we dribbled water on her (3x). She's also still super tense in her body and crunchy...but she's tolerated all 3 of therapies pretty well...all things considered. Her PT mentioned that her right side (legs and arms) are turning inward more than usual, but she thinks it's just a result of her super high tone. If we ever get her relaxed again we can check that. It does seem like she's had an inordinate amount of super tense days. Her body seems to be neurologically out of whack. No real "bad days" per say, but a lot more tense/stressed days (and less real good days). I'm not sure how I feel about that. It just seems that lately she's super sleepy or super stressed. Where's the in between? Awake and happy/relaxed? I'm ready for some of those days...

Look what happened today...


And we have butterflies!!
This is the queen butterfly and the monarch...

Thursday, July 23, 2015

Restless and tense but hanging in there

Reagan was very restless (AGAIN) last night. Ugh. We're definitely seeing a pattern here. Less real/good nights of sleep and more of an extreme...either sleeps nonstop or super restless and doesn't sleep at all! I got up with her multiple times last night because she was very vocal and had turned herself upside down in bed. Each time I got her resituated right side up and under the covers but I don't think she ever went back to sleep. The from 6-7 she started getting more vocal. When I finally dragged myself out of bed, I found her up at the top of her bed SOAKED in pee! Poor thing! (Yes, that meant stripping all of her sheets off and more dreaded laundry! It never ends!) She was super crunchy and tense this morning so we decided to go ahead and cancel her PM&R appt. We just weren't sure how she'd do with it. She took a nice nap this morning and was awake by the time OT got here. She's been tense in her body but OK in spirits...even giving us sweet smiles! This afternoon we helped her get her poo on and I think that helped a lot! She's such a clencher...she clenches it in and I can't even imagine what sort of tummy pains that must cause! She definitely seemed relieved afterwards. She's starting to have some temperature dysregulation issues now and some clonus in her feet. I started the pedialyte last night after her crying episodes, just to be on the safe side. Hoping she can mellow out and have a great weekend this weekend! I would like to ask for some prayers tonight for Gwendolyn. I've been following Gwendolyn and her journey with SMA since she was little (she's now 8 and has defied all odds for SMA). She has an amazing family that dedicated their lives to raising awareness and money for SMA research...what every family of a medically fragile child wishes they could do! It was Gwendolyn's mom talking about giving Gwendolyn pedialyte during her autonomic storms that inspired me to start giving Reagan pedialyte during/before her bad days which has resulted in MAJOR improvement/ceasing of her bad days. Gwendolyn is struggling right now. Something is not right and her family is very worried. Please pray for her to fight through this like she has so many times before!



Wednesday, July 22, 2015

Another sleepy one

Reagan slept last night and then slept a lot today. She did wake up but then took a couple really long naps this morning and this afternoon. No speech today, so that worked out well, but she did sleep through and miss PT. Oh well. She definitely needs her sleep. She's been super crunchy and into her hair when awake! Pretty tense. She woke up right as the nurse was leaving and boy did she wake up on the wrong side of the bean bag chair! She burst into tears a couple of times, she was super sensitive to talking and any noise. I gave her some oxycodone and she did settle down a little, but never fell asleep. I think her tummy was really bothering her. I picked her up and held her and she eventually relaxed enough to doze off. Mike was able to transfer her to bed but she was pretty restless each time I went in to give her medicine...and very handsy...kept grabbing at her tube! Hoping she can sleep tonight and wake up feeling a little better tomorrow!