Friday, July 31, 2015

More tube trouble...new tube at last!

So last night my sweet girl slept...but we STILL had another tube malfunction that left her sleeping in wetness! So before she went to sleep last night I taped her tube in a position that would keep it from popping out but...however where it was taped, it kinked at some point in the night causing the medport to pop open and then leak all over her bed!! So this time not only did she have formula getting pumped out all over her bed and her, she had yellow bile draining from her tube as well! Poor thing. And she slept through it all! So it was around 7am when we figured this out and then I stripped the bed once again and started several more loads of laundry! Thank God I moved her tube change up! I don't think we could live with it another day! She's been a super sweet girl today despite all of that! She had speech this morning and was a little groggy. Then she fell asleep just in time to miss PT! She woke up when we started getting her ready to leave for her tube change. She was awake the whole way there, during and afterward. She was super calm though which is always good for a tube change. The nurse had to go back with her since we had Ryan with us, and she did mention that the radiologist was a bit of a B, but Reagan was super good and there were no issues. On our way home we decided to stop by the Aquarium, but Reagan was a little sensitive to the noise (we think it's the noisy birds she didn't like) and we didn't have her noise canceling head phones with us, so we made it a quick visit. She was a little groggy the rest of the day, took a nice nap but woke up not long after 6. She did doze off on her own tonight around 10:30, so maybe tomorrow will be a super sleepy day? It's feast or famine with her! All sleep or no sleep! :(

How brother entertained himself while Reagan got a new tube! (Waiting room Olympics!)








Thursday, July 30, 2015

Leaky tube and sweet girl

Well, so much for sleep last night for my girl! I was exhausted and was obviously out cold. When I did wake up around 6, I realized Reagan was wide awake and laying completely upside down in bed! I ran in there to find her no covers, upside down, squirmed completely out of her pants (and almost her diaper), arm restraint off, and wet laying in formula/bile!!! Ugh!!! This damn tube! The extension had popped out of her button and then fed the bed (because the lock has broken off and one touch of it when it's in the right position will cause it to just pop out)! Poor girl! So I got her up and changed and into her therapy room. Stripped the bed from top to bottom and started washing sheets. Reagan was a good sport about it though. She's still been pretty vocal today but very sweet and smiley. I did call and get her tube changed moved up to tomorrow...we wait til next week to get this tube problem resolved!! She's been great though. This afternoon she was playing with her eye gaze computer and was a complete superstar! She was using this greeting card program to design her own greeting card and she was just going to town with it. Then we gave her a good bath and then she had both PT and OT! She's still trying to get at that nose today, but we've done our best to keep her hand away from it! Tonight she was super sweet and cuddly...but not necessarily sleepy. Mike laid down with her and eventually she did fall asleep! Maybe we can try for a good/dry night's sleep tonight? 



Wednesday, July 29, 2015

Red nosed cutie

Reagan was a little kooky last night. She woke up around 4am and was being very vocal. Mike went in to check on her and laid down with her and they both fell back to sleep. They were still asleep when I left for my run, but by the time I got back she was awake and vocal again! I changed her and moved her to her therapy room. She definitely seems to get more vocal when you're not sitting beside her or giving her direct attention! She's had a good day today. She had speech and PT and did well with both. We got some super cute pictures of during PT. No more hiccups today but she has had some wet sounding burps. This afternoon we noticed the reappearance of the red nose. It happens about once a week and usually through very subtle movements of her hand, she manages to swipe at it just enough to turn it a nice bright red! Tonight I even put an arm restraint on her to try to prevent it from getting worse. Tonight when Mike put her down to sleep she really seemed to be out. She didn't even move a muscle when I went to hook her up to her formula. Hopefully that means she'll actually sleep tonight! 

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!






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! #GwendolynStrong

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!

Tuesday, July 21, 2015

Half a sleepy day

I thought Reagan had slept the whole night through last night. But Mike mentioned that he heard her making noises at one point but went in to check on her and her eyes were closed. I never heard a peep! When I did go in to check on her at 8am she was still asleep but laying on top of her covers. She sensed me in the room and reluctantly woke up. She was a little groggy at first, but then we finally got a smile! Unfortunately, we made the discovery that her tube had popped out at some point and was now feeding the bed under her. Poor thing. We got her changed (and I started yet another load of laundry) and moved her to her therapy room. She was still a little vocal but ok. At noon we took her in to the pediatrician's office to get cathed again (to make sure the antibiotic cleared her UTI). She nearly lost it in the car when her brother started throwing a fit! Thankfully, once we got there it was super quick and took all of 5 min (thank goodness). She was a pro and they got plenty to send off for culture. We got home with plenty of time to spare (she had OT at 1:30). During OT she was beginning to look a little sleepy but she held on and made it through. She did doze off shortly thereafter and then slept the rest of the afternoon/night. I guess it's time for a sleepy day. I'm just glad to see her finally getting some rest! 

Monday, July 20, 2015

Vocal and very little sleep

Sleep last night was similar to the night before...not much of it. Reagan was very vocal and we were just doing our best to try to sleep through it. Eventually around 6am I got up and went to check on her and she had scooted her way down her bed and was laying on top of her covers/comforter with a leaky wet diaper! So it was another early morning for me, I changed her, got her up and into her chair, and then started washing all of her bedding! I seriously feel like I'm ALWAYS doing laundry! And there is always more! It never ends!!! I so am not cut out to be a house wife! Reagan was a little too kooky/vocal this morning and seemed like she might very well go over the edge. Around 6:45am I gave her some oxycodone and she seemed to calm down a little. Finally around 7:45am she fell back to sleep and took a tiny little nap! She woke up shortly after her nurse got here and was raring to go. She had three therapies today and did well with them all. Everyone had to keep things calm and cool so as not to overstimulate her, but she did well. Speech, PT, & OT...it was a busy day! She didn't seem to be a huge fan of me talking to her nurse this afternoon (she'd just get more vocal) so we tried to keep our conversations to a minimum. Not a bad day though. No sleep. Hoping tonight will be the night!
Ryan at Hop n Happy today! 




Sunday, July 19, 2015

BBQ and a bike ride

Sleep last night was not so good. Our super vocal/kooky girl did not want to settle down and sleep! I'm not sure how much sleep she got...not much (at least she was OK to lay in her bed). I was early to rise for my run, so I did get her out and into her chair bright and early. She's had a really good day today. She's still very vocal, but she hasn't really been sensitive or anything. She had two poos on her own, so that's always a good thing. She's been wiping at her poor little nose for a couple days now and it's really starting to get raw! She's really smooth about it though, she wipes at it when her fingers are in her mouth, so you don't even really notice her doing it! Tricky girl! My Dad and my step mother came over this afternoon so we could see them before they leave for their long trip to Norway/Europe! Ryan swam in the pool with Grandpa (showing off his swimming which seems to get better every day) and Reagan's nurse and I took Reagan out on her bike! It's not an easy task getting her all AFOed up and securely fastened into the bike, but once on she did seem to enjoy it! It was pretty hot though so we did our best to just stay in the shade...which consisted of us making lots of u turns up and down the same stretch of sidewalk! Even my step sister stopped in to join us for great food that Mike grilled up! We had a nice time and everyone was well behaved! Tonight Reagan has been looking pretty restless again. She was having some big yawns and did finally doze off, but she woke up when Mike moved her to her bed. I think it's gonna be another one of those nights. Ugh. Sleep girl!!






Saturday, July 18, 2015

A walk and some kooky screams

Reagan was a little restless when we first laid her down last night but eventually I think she settled into a deep sleep. Unfortunately after 2 days of sleepiness she was ready to wake up a little earlier than I'd prefer on a Saturday morning. She initially woke me up around 5:15am. I went in there, covered her back up, and told her to go back to sleep. She didn't listen. Finally around 6:30am I went back in and changed her diaper and moved her to her therapy room. She was ready to get up! She's had a good day today. She was super sweet and precious this morning so we decided to go for a walk. We walked down the road over to a neighborhood park. Once at the park we heard all kinds of sirens and even a helicopter...we knew there was an emergency somewhere nearby. Turns out, there had been a horrible accident right where we had just been walking 15min earlier. Several cars were speeding down the road, all going way too fast 80+ in a residential area, and the last of the cars lost control and ended up wrapped around a tree. Terrible. Definite fatality. Just thankful no pedestrians were hurt (including us)! We took the long way home, which inadvertatly saved us from seeing the accident firsthand, but it was a looooong walk. Everyone got their full dose of sun! Reagan was great though and even tolerated all of the neighborhood noise from people mowing their lawns without a problem. This afternoon she's been a little more vocal. Lots of crazy sudden squeals/screams. I do think some of it is due to tummy pains (just letting us know all about it). She's had lots of gas and I helped her poo...she's such a clencher! Hoping she can settle down and get some sleep tonight! 

Friday, July 17, 2015

Sleepy but sweet

Reagan slept last night! After her sleepy day yesterday, she just kept sleeping! She did wake up though. She's had a few longer naps today but she didn't sleep the entire day like she sometimes does. When awake, she's been pretty precious! Super calm and quiet. Very still. A little serious, but good. She took one long nap this morning and another this afternoon. She was asleep when the nurse left and laying in her bean bag chair. I was cooking dinner and checking on her periodically on the monitor. She kept waking up with a fuss, kicking around a little, and then going right back to sleep. At one point I looked at the monitor to find her GONE! I knew she must have slid off the bean bag chair but I was horrified at the thought! I took off running and ran into the room to find her laying face down on the floor fast asleep! Poor thing! Thank God there wasn't anything nearby that could've hurt her as she slid down! I moved her to her wedge on the floor and changed her diaper and she stayed asleep! She only woke up one more time so I eventually just moved her to her bed! Talk about a sleepy girl!

I took Ryan to the pool this morning with one of the kiddos from his class. He was interested in the splash pad but not too interested in getting splashed by it!






Thursday, July 16, 2015

Sleepy and still not wanting to pee

Last night was another night of not much sleep for my girl. I think she was just very restless again. Finally around 6am I heard her make a not so happy noise, so I jumped up and ran in there. She was OK but a bit serious at first. I think just disoriented. Once I picked her up and moved her to her chair, she was all smiles again. No pee again. Her nurse gave her a little while but then finally tried the water trick on her and sure enough, it worked immediately. She dozed off a little later and then slept for 3hrs or so. She woke back up just in time for her only therapy today, OT. After therapy and still no more pees, her nurse tried the water trick again. Again, she got another pee. (And again tonight...3 pees but every time we had to use the water trick!) Ugh. What's going on with this girl! Pee on your own already!! She's definitely been more still today. Less chorea and less handsy. Hopefully this will eventually translate to less tension in her body but as of now, she's still pretty stiff. She had another long stretch of sleep this afternoon/night. I'm hoping maybe this means her body will finally relax a little and get some sleep! It's nice to have such a smiley girl, I just wish her body would cooperate!

Wednesday, July 15, 2015

Pee patrol

I don't think Reagan got a lot of sleep again last night. She was asleep when Mike laid her in bed and when I went to hook her up to her feed, but the second I laid down in bed, I heard her making noise and rolling around. She was super grabby last night with her tube and I think that led to her tube popping out and feeding the bed in the middle of the night. Mike got up around 1:30am, I think because he heard her and was going to try laying down with her, but what he found was quite the mess! She was dry but the edge of her bed was soaked. We put some towels down and he laid down with her. She'd fall asleep when he was beside her but would wake up the second he got up! Not sure how much actual sleep she got. She's been super precious again today. Super smiley and vocal. Still has the sensitive eyes and lots of chorea (crazy legs and putting hands in her hair/mouth a lot). And super sweaty back and cold hands and feet. Super sweet though and SO smiley! She had speech and PT today and did well with both. One little hiccup we've been dealing with all day is her holding her pee! She went once this morning at 9:30am and then didn't go again all day! Her pump did feed the bed for a bit last night but not long. Not long enough for her to be dehydrated, and she's been getting extra pedialyte, so that definitely shouldn't be reason. I really think it's more likely due to the high tone in her body. She's so sweet, but her body is just so tense! Finally at 10:15pm I decided something had to be done...I broke out the warm water and trickled a little on her down there and sure enough, she immediately opened the flood gates! Then she became totally relaxed and looked like she might fall asleep! I'm sure she must have felt SO much better! I can't imagine holding it that long! Poor girl! Hoping this sweet girl can get some sleep tonight!

Tuesday, July 14, 2015

Too sweet for sleep

Reagan didn't sleep much last night (if at all). She was super restless and a bit agitated/vocal when it came time to go to bed. When we finally went to bed (around 1am), she was still awake. I'm not sure if she ever really fell asleep. She, thankfully, was content enough to lay in her bed instead of her chair. And after my run this morning, when I picked her up...she was smiling from ear to ear! She's been a super sweet, smiley girl today. Slightly sensitive in her eyes, squinting here and there, but SO precious! She had school this morning and she did a great job with that and then OT this afternoon and she worked on sitting and did a great job with that as well! She really has been a superstar lately with therapy! Her body is still very tense, she's crunching a lot and having a lot of chorea (kicking her legs around nonstop), and her temperature control is still very off (add a side of cold feet to her sweaty back)...but she seriously couldn't be any cuter! She's been in such a great mood!

Monday, July 13, 2015

So much better but crunchy

Reagan woke up SO much better today! Her body is still super tense and she's been a crunch-o-potomus, but she's had huge smiles and you can just tell she feels loads better. I think a poo or two has helped, but that tummy is still a-rumbling! She had speech this morning and although she was cooperative, she wasn't super participative. She was making great eye contact, just not really wanting to do the eye gaze. During PT she got in some good stretching, which is great since her body has been so tense and crunchy (hands tangled up in her hair nonstop). And during OT she spent some time in the stander which really seemed to help her open up and relax a little. She's had a good/busy day of therapy...especially considering her day yesterday. Tonight she's been a little prone to temperature dysregulation. After only sitting in her chair for a short while, her back was completely drenched in sweat! She faired a little better on a pallet on her floor where she could roll around and stay cool. Hoping she can sleep tonight...she's doesn't really seem to be winding down AT ALL!!

Here are a few pics of my new caterpillar obsession as Mike would like to call it! I'm growing Monarch caterpillars again from eggs! Maybe I should have been an entomologist?
And now we wait...




Sunday, July 12, 2015

Tummy pains?

Reagan woke up today! Unfortunately, something definitely seems to be bothering her. If I had to guess, it's probably her tummy! It's been days since her last poo and she's just so tense and crunchy, poor thing, I think she's in a lot of pain. It definitely seems to come in waves. This morning she was borderline tears and I was able to give her oxycodone and she fell asleep for a while. The rest of the day nothing seemed to help her. She wasn't miserable nonstop...she even would smile and make great eye contact with us off and on...she was just miserable in spurts. She did cry several times, but it wasn't the nonstop cry all day sort of crying, so I wouldn't really consider this an actual "bad day". She's just SO TENSE. Hoping she can sleep this off tonight.

I wanted to post this amazing video of what Ryan did in the pool tonight with Mike! Talk about a natural! I couldn't believe it!


Saturday, July 11, 2015

Sleepy time

So we finally had a nurse on a Saturday AND Grandma came to visit and Reagan had a sleepy day! She was only awake a few brief times but she was pretty out of it. She wasn't upset or anything (I'm not sure if she was even awake long enough to get upset), but her body was a little tense and she was just kind of in a fog. Ryan enjoyed the one on one Grandma time and we worked on getting him to drink from another cup (he's super attached to his one type of sippy cup and carries it around in his mouth like a pacifier...a habit we HAVE to break)! He cried for the first couple hours but eventually drank out of it without a fight. Definite progress...

New cup we're trying. It's called the Reflo smart cup. Just a regular cup with a valve you push into it to keep too much from coming out at once! Pretty great idea. 

Friday, July 10, 2015

Swimming & baseball

Reagan slept OK last night. She woke up again around, I went in told her to go back to sleep and put an extra cover on her. She listened and did go back to sleep but then woke back up around 6:30am and was super talkative. Finally around 7:30am, we changed her and moved her into her chair in her playroom. She had an early therapy this morning with speech at 9am. She ate some more food and worked on her eyegaze computer. (Good news is insurance finally approved her for speech 3x a week again! They had cut her down to 2x a week and we were appealing it with no luck!) She got super vocal again after her therapist left but eventually settled down. PT came around 11:30am and she worked on rolling and sitting. Some of her best work yet! Again she got a little vocal and excited for a bit but eventually settled down. That's when we decided to take both kiddos swimming. Reagan did really well but only stayed in about 30min or so because her cheeks were starting to get pretty red. She did get some sun though and seemed to enjoy herself! She got a little vocal again so her nurse gave her some ibuprofen and that seemed to help her settle down. She eventually fell asleep in her bean bag chair. Such a cutie pie. That didn't last long though. She woke up and was vocal/kooky once more. Tonight we went to a Round Rock Express baseball game. Mike got free tickets from work and we took my dad and stepmom. We had never been before so we didn't really know what to expect. We wanted to take Reagan but figured for the first time it's probably better we go check it out without her. We weren't sure how Ryan was going to do, but other than giving the ladies in front of us a hard time, he did pretty well. We all had a good time!  
Bathing beauty!




Reagan's nurse Megan trying out her floatie!
She said it's actually pretty comfortable!

Worn out after the swim