Sunday, May 31, 2015

Good day and sleep

Woo hoo! Reagan FINALLY slept! Granted, it was only about 5hrs, but I'll take it! She's had another really good day today. She's been less sensitive and more laid back. Very sweet and smiley.  We have been giving her Pedialyte for the last couple of days...Wednesday marked day 12 since her last bad day and I was afraid we were headed toward another. But it seems that adding the pedialyte has helped to stave off the bad days and today she seems more relaxed than she's been in days. Her temperature regulation is a bit off, she's sweating her back wet, but otherwise she's been great. Tonight she's precious but still not wanting to fall asleep on her own. I gave her clonidine again and it seems to be working. She is finally asleep (by midnight). Hoping for another good night's sleep and great day for my girl!
Chillaxin


Pizza, one of the only foods he'll eat right now! 

Saturday, May 30, 2015

Sweet but still no sleep!

Last night was even more rough than the night before. Reagan was very restless and would moan/fuss and I'd have to run in her room and calm her. This happened at least once an hour, so needless to say it was a looooooong night! The thing is, she wasn't fussy or having a bad day, but I think she was just so frustrated by not being able to sleep (and not having anyone in there constantly beside her)! I tried everything I had to get her to sleep, but nothing was touching her! Poor thing. Thankfully she was well behaved (despite no sleep) and somehow I survived the morning without a nurse. Grandma did come to the rescue though. Reagan was very happy to see her Grandma (still slightly sensitive, but a pretty good day overall)! Ryan was pretty happy to see Grandma as well! He's still got a nasty cough, so we've done our best to keep him away from his sister all week. Hoping he's almost done with this junk and we can stop our quarantine! Tonight Reagan was super sweet but still not getting sleepy. I did finally resort to clonidine around 11:30 and she appears to be dozing off in her bed! Praying my girl can finally get some much needed sleep!

Friday, May 29, 2015

Busy day

Reagan did not sleep well last night (and neither did I). She was very restless and would moan and groan until I would go in there. It was a long night. She had a busy morning though...early morning speech followed by another make up session of PT. She's still very sensitive and kooky/vocal, so everyone just had to be careful. She got a little extra worked up with PT, but she powered through it. We gave her a bath immediately after, and that seemed to help her relax a bit. She had the rest of the afternoon to just lay back and take it easy...my afternoon, however, was jam packed! I picked Ryan up from school and we made a long anticipated trip to the Aquarium (he's been asking to go all week...he asks for "bish"). Afterward we drove into town for a drs appt for him. Then we headed home in Friday traffic and had an hour or so before we left with my Dad and step mother to go visit my aunt and cousins in Spicewood (an 1hr and 15min away). On our way there I received a text from the nursing agency that our weekend nurse had last minute canceled for the weekend. I was beyond furious. Thankfully one of our other nurses was willing to pick up most of the hours so we won't be totally without help. So other than the major annoyance, it was actually a beautiful drive. It was great to see everyone, but Ryan was driving me crazy! He was running a muck the entire time. By the time we got home it was way past his bedtime so he went straight to sleep. Reagan on the other hand was not that easy. It doesn't appear that she's going to sleep tonight. Hoping I'm wrong because I'm big time exhausted!





Thursday, May 28, 2015

Hanging in there!

Reagan had another kooky sort of day today! Thankfully, I was right and she did sleep last night! And she woke up this morning with a smile still on her face! She's continued to be very vocal and more sensitive/tense today, but she's hanging in there! To be honest, we really thought she was going to have a bad day yesterday (as it had been 12 days since her last bad day), but she has pulled through and proved to us once again that she follows her own schedule! Hey, we'll take it! But we did start adding the pedialyte flushes on Wed and we'll just keep them coming over the next few days...just in case! I did notice a few "symptoms" that have me slightly concerned about imminent bad days today. Her breath had a bit of a different smell, she also had increased body odor, and tonight she was doing a lot of mouth movements (licking, smacking, and swallowing). Hopefully it's nothing, but just something to note. Today she only had one therapy OT. She got very vocal again during therapy, but at least she got in some good stretching! Tonight she was really fighting sleep again. I tried her out in her bed but after an hour or so of increased vocalizations and lots of kicking around, I finally moved her back to her chair. It doesn't appear that she's going to sleep tonight, but I'm hoping maybe she'll get some sleep! Please keep my girl in your prayers!

Wednesday, May 27, 2015

Super vocal

Reagan slept well last night and woke up this morning a bit on the spunky side! She's been a lot more vocal today, a little kooky vocal (and sensitive), but never lost her cool. She had a SUPER busy day of therapies! Starting this morning with speech, which by the way, her computer was working fine today (so no clue why it was freezing up yesterday)! Then she had PT. She did a lot of stretching/massage and Reagan seemed to really enjoy it. Then this afternoon she had OT and she got the most vocal for that. They did a lot of body work (on the floor stretching), so maybe it was just a little more than she was ready for?!? Either way, she managed to get through that OK. She actually dozed off right afterward and was sleeping when it was time for school. She woke up 30min later (which she has the habit of doing...sleeping just long enough to miss a therapy), but little did she know, her teacher and speech therapist were still available! She was really tense though, so at first we thought there was NO way she would tolerate school, but after a quick bath, she seemed much more relaxed. So the teacher and speech therapist both came out for a late session. They had to take it very easy (super calm and quiet), but Reagan actually did very well! Tonight she was a little more kooky for me than Mike. She actually seemed to relax and quiet down when he was with her. She did enjoy me holding her though, and she eventually dozed off in my arms. But when Mike carried her upstairs to bed, she woke back up and went crazy again! He eventually gave up on getting her to sleep and left her in her bed. I went up and tried to coax her to sleep, but it was a no go. Then I went downstairs and made up her formula for the night and by the time I got back upstairs...she was OUT. Mike and I are arguing about whether or not she'll actually sleep tonight. I think she will, he thinks there's no chance! I hope I'm right!

Tuesday, May 26, 2015

Wonderful Day!

What can I say...it's been another WONDERFUL one for my girl! Seriously! She slept well last night and woke up this morning just as sweet and calm as can be! She was very still this morning, not even really into her hands. But as calm as she was, she was (and still is) sensitive to music on tv and talking. This morning she had an 11am appt with her neurologist. This was just a 6 month follow-up. I felt like we had just seen him, but I guess that's because we saw him at the end of February when she had her 24hr EEG. Anywho, I can't stress enough what a pleasant, downright cheerful guy her neurologist is. For any of you who see neurology, you know that is almost never the case! We honestly didn't have any new issues to discuss, but I did mention us adding pedialyte flushes on her bad days (and the improvement we saw with her last cycle) and he gave us an order for that (for her nurses). We also discussed her "bad day smell" and the need to collect a urine sample when she has it. Ahhh, the elusive urine sample. I mentioned to him about her having polyols in her urine when she was little and that it was something her geneticist told us he's never seen in another kid...ever! Crazy. Needless to say, we gave our neurologist lots to research! And I have no doubt, he will! We made a quick pit stop at a nursery to pick up a few more bedding plants and then got my girl home just in time for OT (and I worked in the yard). Reagan had a really great OT session. Lots of stretching and she seemed to really enjoy it (even leaning into it)! Then an hour or so later she had school/vision. We were having some issues with her Tobii eyegaze freezing up, so they had to work on other things, but her vision therapist said she was doing really well using her switches! Tonight she's been wonderful too! Hoping she can continue to string together more good days!

Monday, May 25, 2015

Great day, bad weather

Reagan had a GREAT day today! She's been super precious again. Very calm and laid back. Just so content. She had speech this morning...the only therapist working today on Memorial Day. She did great with that and she was talking about how well she's doing answering questions with it! This afternoon we had some serious weather move in and it was POURING! The tornado sirens even started going off. We were watching a lot of news and eventually moved everyone downstairs close to the pantry (the only room in the center of the house and under the stairs)! Thankfully we didn't have to seek shelter, because Ryan would have definitely driven us all crazy in that confined space (he's got a runny nose and bit of a cough today so I'm wondering if maybe he's getting sick)! Reagan was super laid back through everything! So glad to see her so relaxed and calm. Tonight she was kicking around a little more than this morning, but she was still super relaxed. Lots of cuddling again tonight and she dozed off on my lap around 11:30pm with the help of clonidine. Love this girl!



Sunday, May 24, 2015

SO precious and darling!

Reagan slept well last night and woke up this morning PRECIOUS!! She has been such a darling girl today. SO darling. A little vocal this morning, but good vocal. Around 1pm her new weekend nurse notified me that she had just thrown up! We immediately told her she could go home...no need to risk exposure to another stomach virus! (That last one was horrendous!) So my girl spent the rest of the day just hanging out with us! My Dad and step mother came over this afternoon. They cut their biking trip short (they were supposed to be gone through mid June). My Dad had gotten heat stroke on his second day of riding and was never able to fully recover riding 60+ miles per day! It's too bad they didn't get to make it all the way to Maine (they were riding their bikes from Florida to Maine...yes, they're a bit crazy), but I'm happy they're back! Ryan was ecstatic to see his Grandpa (and not at all happy when he left)! Lots of rain here. Lots. It's crazy. You'd think we moved to Seattle instead of Austin! Reagan was SO tolerant of everything...the loud tv, her crazy brother, us talking! Super laid back today. Love days like today. Tonight I held her for hours...she was so cuddly and sweet! Love this girl!! She, however, was NOT going to sleep on her own. Finally at midnight Mike laid down with her but she still wouldn't doze off. I gave her clonidine around 12:30am and she fell asleep around 1am. Sleep little princess, sleep!


My view tonight...staring into the eyes of this princess! :)


Saturday, May 23, 2015

Calm and content

Reagan slept well again last night. She moved around a lot more in her sleep, but she still seemed to be sleeping pretty soundly. She slept in again and woke up with a wet bed. She was calm and content though. Still serious, but wide eyed and precious. She was pretty groggy most of the morning, but was really fighting sleep. She did finally have that big blowout she was threatening us with yesterday! Thankfully it was all fairly easily contained (just added to my laundry load)! She just took it easy all day. She was very laid back and we only heard a few peeps out of her all day. Tonight she dozed off on her own again. Such a precious girl.

Friday, May 22, 2015

Serious and sleepy

Reagan slept like a rock last night! Seriously, we don't think she moved all night long. She slept in this morning and didn't wake up til 9:30am. She was very serious (the smiles were long gone), but she was calm. PT came at 11 and worked with her. They got her up into her stander only to hear something that sounded like a major blowout! They immediately got her down only to find out it was a false alarm! Silly girl! At least she got that out! This afternoon she took a nice long nap. She woke up and was very cool and calm (even her brother's craziness didn't other her). Then tonight she dozed back off on her own early...hoping she sleeps well and wakes up happy tomorrow. 

Thursday, May 21, 2015

So sweet and a little sleepy!

Reagan woke up this morning with a giant wet diaper. She had soaked through her clothes and her sheets...pretty much everything was wet (and it was the stinky pee, so that's an added bonus)! Not sure how well she slept with all of that. Needless to say, we decided to just throw her in the tub first thing. She was all cleaned up in no time! Thankfully she was super calm and smiley, so she didn't seem to care in the least! She was very laid back today. So sweet! The sweetest little smile EVER! She ended up dozing off again around 11:30am and then slept til 3:30pm. Just long enough to miss both OT and school/vision! Sneaky little girl! She was awake the rest of the afternoon and tonight until her nurse left. When we went upstairs to get her, she was out like a light! I missed my snuggle opportunity, but so glad to see her falling asleep on her own. Hoping she finally gets a solid night's sleep tonight!

Wednesday, May 20, 2015

Good girl

Reagan was a bit restless again last night but I do think she slept some. She's had a good day today. Quite a few therapies, so she stayed busy. Her speech therapist is out with strep (second therapist in two weeks), so no speech today, but plenty of other things. Her PT came at 11 and worked with her, mainly on sitting and kneeling. Then OT came at 1 and she got some more good body work. Then at 3:30 her teacher and speech therapist from school came! It was a busy day, but there was enough time between each therapy to give her a little break! All in all, it was a good day. She was super sweet and calm and just an all around good girl!

Tuesday, May 19, 2015

Cardiology appt

I'm not sure how much Reagan slept last night, she was asleep when Mike put her to bed (her eyes were closed but she was still restless and putting her hands in her mouth)! But she stayed in bed and she was quiet (so we slept)! This morning at 5:45am when I got up to run, I found her sideways in her bed all tangled up in her tube! Thank goodness she didn't pull it out or pull it around her neck! She's been a sweet girl again today. No therapies...she had an afternoon cardiology appt that interfered with everything so we had to reschedule OT and school. We were able to get a bath in this morning, so that was good. Then this afternoon, we picked Ryan up from school at 1:45pm and headed into town for her appt. Her last cardiology appt was in Houston in 2011...so this has been a little overdue. They did both an EKG and an echo (which lasted longer than any of us anticipated...Ryan was getting very impatient)! Thankfully everything came back perfect and her heart looks good! Thank you God! So we're just going to follow up with cardiology once a year just to keep an eye and make sure she doesn't develop any sort of cardiomyopathy that sometimes happens in kids with mito. Thankfully it was an uneventful appointment! The rest of the afternoon/night was pretty laid back. My girl was definitely fighting sleep! She dozed off in my arms for a bit but was very jumpy the whole time. Then she got a second wind and we eventually had to try clonidine. For now, she's in her bed, but she jolted awake when I adjusted her tube. Hoping she can get some rest tonight!

Monday, May 18, 2015

Awful night

Reagan had an AWFUL night last night. Just awful. She'd doze off with us right beside her holding her arms down, we'd get up, tipee toe back to our bedroom, only to have her start crying the second we laid back down! This happened over and over AND OVER again last night. I have no idea how many times, I lost count! There were definitely periods where she'd sleep for longer little stretches, but in general, we were up and down all night trying to soothe her! No medications were helping and it's hard to tell what she was crying about other than just wanting us beside her. This morning...she was fine. Perfectly fine. A little on the sleepy side and still a little sensitive to sounds and talking, but fine! She had speech first thing, her therapist did have to turn the sound down a little on her computer, but otherwise she tolerated it well. Her PT came in knowing about the sensitivity and she was careful and had a great session. This afternoon she had OT and that went really well too! I'm just so glad she was able to tolerate her therapies and get some much needed stretching in! She's been so crunched up and into her hands, she really needed it! All in all, she's been a good girl. Sweet but still wanting her hands shoved down her throat at all times. No naps today, so I'm REALLY hoping she'll sleep tonight (or at least let us sleep)! On a side note, Ryan had the day off school so we ran by the aquarium and renewed our family membership! He had a blast and I can't wait to take Reagan back!




Sunday, May 17, 2015

Much improved day

Last night was a rough one. My girl fell asleep last night and slept for a few hours at first, but the rest of the night was her medicine not working and her waking up prematurely every 1-2hrs. At least we got a few couple hours of consecutive sleep! This morning she was still pretty fussy but her medicine seemed to be working a little better and she was sleeping for longer stretches (of course). Her Thursday night nurse picked up a 12-8pm shift today to help us out and it seemed once she got here, all was good with Reagan! When she finally woke up, she was calm and quiet. Keeping her eyes mostly closed and crunching up in a ball (putting both hands in her mouth at the same time)! She was amazingly calm though and even tolerated sitting in her wheelchair to play with toys! Quite the change from yesterday! She's been consistently having two bad days in a row for a while now, so we were thrilled to see that she was already feeling better today. The only thing we changed...yesterday and today we gave her ~10 10ml flushes of pediatlyte throughout the day. Our little friend Gwendolyn who has SMA just started having autonomic storms over the last couple years and her mom mentioned the other day that the one thing they've done that seems to help her, is to give her extra pedialyte throughout her day. I thought it certainly couldn't hurt to try it, as Reagan's previous neurologist often referred to her bad days as some sort of autonomic storming episode. We'll see if we see any lasting improvement over the next couple of weeks. That sure would be nice! Anyway, Reagan was doing so well tonight that when her nurse left, we were able to bring her downstairs and she tolerated her brother and the television just fine (not a fan of us talking though). Unfortunately, the later it got, the more agitated she got. No crying...just restless and trying to cram her hands down her throat! Her medicine wasn't helping either. She wasn't getting sleepy or settling down at all. It was clear she wasn't going to tolerate her bed and it would be another night in her chair. We moved her to her chair and Daddy eventually got her to doze off. Something tells me it's going to be another long night...
Brother talked daddy into swimming today (in the cold pool)...

Saturday, May 16, 2015

Bad days are upon us

So, I can't lie, I was worried. I had counted the days and realized that her last bad cycle started 12 days after her previous bad day (and yesterday was Day 12). I knew there was a chance this could happen, but I was hopefully optimistic. There really weren't any other "real" signs. No bad day smell, no dry lips, no temperature regulation issues or increase in sensitivity or tension. But the long nap yesterday was out of the ordinary and she had a few stinky pee diapers (just something to take note of). Anywho, Reagan slept in her bed last night but woke me up around 5am with a fuss. I went in her room and she was still asleep but agitated. Knowing it was likely we had run out of good days, I tried to get a head start and gave her a dose of oxycodone. This helped her to doze off until 8am. When she woke back up, she was tense and fussing, but not crying. I got her changed and settled in her chair, but the more I interacted with her, the more it was obvious...the bad days were upon us. Then the crying started up and she's been crying or moaning/fussing every waking moment since. She's just plain miserable. Her lips have now become very dry (not all peely just yet like the usually get) and there is a lot of finger biting and hair pulling going on. Finally this afternoon I had to put on one of her arm restraints because she just kept fish hooking herself over and over again. The oxycodone seems to be the only thing helping her and it's only working for 2 hours or so. Then she wakes up and is miserable and clonidine/ibuprofen aren't touching her. I definitely think it's time to have a discussion with palliative care about her dose. Only working for a max 2hrs out of 4 (she's supposed to be getting it every 4 hrs) just isn't cutting it. It's obvious, she either needs to be getting it more frequently or at a higher dose. For now, we'll just try to hang in there and get her through the weekend, but I definitely need to talk with them about it next week! Very nervous about tonight! Just praying my girl can get some sleep and wake up feeling better in the am! 


Friday, May 15, 2015

An entire week of good days

I don't think Reagan got much sleep last night, but she was quiet and stayed in bed, so we were able to sleep. Finally around 6:45 Mike moved her from her bed to her therapy room. She had leaked through her diaper, so I got up and changed her. She was still a sweet smiley girl though, so I was super happy about that. Her tummy was making some serious noises this morning, but nothing came out when I vented her, so I think it must be further down (if you know what I mean). Her speech therapist called in sick, so the only therapy she had today was a make up session of PT at 11am. She did a great job and worked really hard, then shortly thereafter she dozed off and slept the entire afternoon (a little out of the ordinary for her)! She woke up just in time to get a quick poo and bath in before her nurse left! We were a little worried that she might be a little sensitive, but she's been pretty good tonight. Lots of chewing on her hands and hair, but overall pretty calm. No nurse most of the weekend (our Thursday night nurse is picking up half a day on Sunday), so I'm really hoping Miss Reagan behaves herself! It's been an entire week of good days...for that we are SO thankful!!

Thursday, May 14, 2015

Super sweet

Reagan slept well again last night and woke up super sweet again today. Not a lot going on today. Even though the weather has been anything but cooperative (it's been raining for weeks), we were thinking maybe we could try to get out and go to the aquarium?!?! Nope! Apparently schools had the same idea! I'm glad we called ahead...three different back to back to back field trips (the first of which was 150 kids)!! No way Jose! So instead we just had a laid back kinda day at home. Reagan did have OT this afternoon, she got a case of the crazy laughs at first, but pushed through and ended up doing a great job! No other therapies today...just a super cute girl! She was looking tired and we thought for sure she'd doze off while we were at Bible study tonight, but no, she was still kicking when we got home. I picked her up and held her and she eventually dozed off in my arms. Unfortunately, she woke up while Mike was transferring her to bed and she's been tossing and turning ever since! Hoping she'll settle down and actually sleep tonight!

Wednesday, May 13, 2015

Another good one

Reagan slept well last night and had another good day today. She was very easy going and calm. Still can't really get a laugh out of her, but we did get some little smiles. She wasn't a huge fan of us talking to each other today, there were a few times that she'd vocalize and look borderline weepy, but she was fine as soon as we stopped. She had speech and PT this morning and did well with both! We were finally able to get her back up and in her stander again now that we got it adjusted! This afternoon she had school and she did exceptionally well with that as well! She was responding yes (with her yes no buttons) to things she was interested in and then very purposefully activating her switch to watch the switch toys she prefers! Her teacher was SUPER impressed! She did great! Tonight she was pretty laid back (except being a little sensitive to music on tv) and eventually dozed off in my arms. Such a sweetie! Hoping for another great one tomorrow!

Tuesday, May 12, 2015

Good day

Reagan had another good night's sleep last night! She woke up around 7:30am and was still serious but sweet. She's been very laid back and calm today. Still no real smiles or laughs, but we know they're in there! This morning the DME guy came by to adjust her stander. We're kinda nearing the end of growth for this thing. It had obviously shifted a little (a few knobs were loose), but she's obviously grown a little as well, so he made some major adjustments and she's good to go now! She was such a trooper, letting us move her in and out and sit her up and lean her back, and then afterward she even spent some time standing in it! Then this afternoon she put up with her brother's craziness swinging on her swing over and over and listening to "A tooty ta" over and over again! She's definitely laid back today! While brother took a nap, Reagan had school and vision therapy and did a great job with both! It's been a really great day for my girl. Hoping for many more! 



Monday, May 11, 2015

A little serious, sleepy, and poopy

Today was another serious one for my girl. Her nurse who has been in Africa for the last few weeks was finally back, so for that we are very thankful. Reagan welcomed her back with 5 poos today! Yep, it's feast or famine with this girl! Hopefully getting it all out will help her feel a little better. This morning Reagan had speech, a quick nap, then had PT. Not super involved in therapies today. Between being serious and sleepy, I'm sure it was hard to get much interaction out of her! She's been a little more relaxed today (hence all of the bowel movements). We were able to get in a bath with Grandma before she left (after poo #3). Hoping my sweet girl can sleep well again tonight and wake up feeling even better tomorrow.

Sunday, May 10, 2015

Serious but stable

Reagan slept well last night and even slept in a little this morning. She woke up a little wide eyed and startled but then settled into her serious look and has been super serious ever since. She's been very calm and quiet...still seems a little sleepy...but serious. I miss the smiles, but I'm glad to see that she's at least content. Still a little spitty today. Something I've noticed the last few days, she's having lots of leaky diapers (and it ends up on her pants or bed), but it's very stinky pee. I can't really describe it, but it has a weird smell to it and it sometimes takes multiple runs through the washer before it goes away! I'm just wondering if this smell has any significance (maybe it's related to something she's not metabolizing that's ending up in her urine)? This is one of those instances that we might need to collect a sample and take it in to be analyzed. Of course, as always, we usually notice it on the weekends!! Overall, she's had a serious but stable day. Hoping she can get some sleep tonight and maybe wake up tomorrow a little more happy! 

Saturday, May 9, 2015

Super sweet girl

Reagan slept in her bed last night but only til about 4am! She woke up and just wasn't going back to sleep, so we moved her to her chair. She was super sweet and smiley though, so we were happy about that. She must've known that Grandma was on her way (at exactly 4am) and just couldn't go back to sleep! She was super happy to see Grandma this morning. She's been SUCH a sweetie today. A little spitty and still chewing on those fingers nonstop, but so precious and good! Tonight my mom and I went out for an early Mother's Day dinner. We had a great time and both kiddos were well behaved while we were gone! Hoping for another great day tomorrow!




My mom's dog loves Reagan

Ryan playing with our next door neighbor

Friday, May 8, 2015

Really good day

Reagan finally slept (in her bed) last night! She has been super sweet and smiley all day today (Grandma is in for a treat this weekend)! This morning she had an early session of speech, a poo on her own, and then PT. She worked on sitting during PT and sat on her own for over a minute! It's been a really good day for my girl. The only thing that was maybe a little off...temperature control. A little sweaty, but we were able to get a nice bath in this afternoon, so she's back to smelling like sunshine! Hoping my sweet girl can get some more sleep tonight and have a great day tomorrow!
Doing headstands...

Thursday, May 7, 2015

Sweet girl and new gj tube

Still no sleep last night. Seriously, I don't know if she slept AT ALL. I woke up at 5:15am to her vocalizing, but she looked completely wide eyed and not sleepy in the least. I don't know if that means she slept and was rested or if she never fell asleep in the first place!?!? She was smiling and content though so I was happy about that. Unfortunately I couldn't go back to sleep though because I had to run at 5:45am, so that was a whopping 4hrs 40min of sleep for me. Ugh. I don't function well without sleep, although for the past 8yrs, I've been forced to cope with what I can get. We had a very busy day today. This morning we had an appt at Dell to have Reagan's gj-tube changed out. It's been exactly 4 months to the day since her last tube change. We figured we had better get in this week rather than risk spending another Mother's Day in the ER due to a broken tube (last year's mother's day). Other than waiting over an hour in a noisy waiting room, everything went well. She had some slight discomfort as they pulled it out and put the new one in, but other than a few vocalizations, she held it together well. We even ran over to the GI doctor's office to get a quick weight. 49.5lbs...she's holding steady! We're happy with that! On our way home, she was starting to look sleepy in the car, but she got a second wind when we got home. She had OT and got some really good stretching in (and gas out) and then she had vision/school. Again, there was a short period of time right after school where she looked as if she might doze off, but it never happened. She was pretty wide awake the rest of the night. Constantly fighting us for those hands! Tonight was FINALLY got her to sleep in her bed! Praying she gets a good night's sleep!



Wednesday, May 6, 2015

Better but still tense/kooky

Today was a much better day for my girl. Whew! These back to back bad days are brutal on us all.  Sleep wasn't great last night and Reagan is still very tense and vocal/kooky, but definitely a huge improvement from Monday & Tuesday! She had PT and speech today and although neither of them were super productive, but at least we tried! One thing her PT did notice...her stander is way out of whack! We don't know if she's grown or it's just shifted when moving or what, but it's not usable the way it is! We're having to get the DME company to come out next week to readjust it! Tons of chorea today. This girl has been moving, moving, moving. She's still really into her hands so we're still having to use her arm restraints more than I'd like, but it's the only way to keep her from shoving both hands down her throat! Thankfully, now that she's not crying anymore, she's not actually biting, so that's good. Tonight I was really hoping she'd settle down and doze off on her own. No such luck. Not even snuggling with mommy in the chair or daddy in bed worked. We finally just had to just put her back in her chair at 12:30am and go to bed. Hoping the blend of sleep oils I used will lull her into a deep sleep but not counting on it! She still looks to be pretty wired! Good night...

Tuesday, May 5, 2015

Another rough one

So today was a pretty rough day as well. Not sure how we got back into having two really bad days in a row again, but we're there, and we hate it. Reagan slept OK. She was back awake again around 4am, but that was far longer than she had slept previously with her pain meds so I was happy with that. She went back to sleep around 4:45 and slept til 6. Not quite what I had hoped for, but whatever. Unfortunately, today has been just about as bad as yesterday. Lots of crying. Just an all around miserable girl. Again we canceled all therapies and just tried to keep her comfortable. It wasn't until tonight that I finally saw a glimpse of improvement. She finally stopped crying and was awake for a long period without requiring any pain meds. She was still very tense and definitely a little kooky, but even gave me a few smiles and laughs, definitely better. This all ended at bedtime. Mike tried laying down with her but she just got super vocal and more kooky. I gave her some clonidine and it definitely didn't help and shortly thereafter she started crying again. Poor thing. It was awful. She didn't doze off until 1.5hrs later when I gave her some oxycodone. Ugh. This is so hard. What is hurting her? Is it psychological? Is it physiological? We don't know. No one knows. Hoping this is the last of it and she wakes up feeling better in the morning. Please keep my sweet girl in your prayers...

Monday, May 4, 2015

Break through pain

Reagan slept in a little this morning. Our nurse that was filling in for us came in at 9am and Reagan started moving around a little but was still asleep. Unfortunately, she had already leaked through her pants and was laying on a wet bed, so we had to get her up and changed. She woke up upset and agitated but oxycodone helped her to settle down and go back to sleep. Unfortunately, there was a lot of break through pain today. The oxycodone only lasted 1-2hrs at a time and then she'd wake up crying and unable to go back to sleep. Lots of flailing, biting, swiping at her face, pulling her hair, and crying her breath away. It's been an awful day. Our nurse had to leave at 2 (to get to her other shift) so we were on our own. Unfortunately, this didn't go so well with a boy who didn't want to nap and had been very whiney/high need all day. I was running up and down the stairs trying to appease each of them (and not doing a very good job with either). Ugh. So stressful. I'm really hoping and praying this is just a one day thing and tomorrow Reagan is going to be feeling much better! It's so hard to see her suffer like this. It just breaks my heart and stresses me out beyond belief! Praying for sleep and a better day for everyone tomorrow!

Sunday, May 3, 2015

Sensitive and sickie brother

Reagan slept well, waking up a little early, around 6:30am this morning. She was super sweet and laid back though, so we all breathed a sigh of relief. Well, that is, until she heard me talking to Mike. She freaked out! Tears and all! At first I just thought it was me, but as it turns out she was fine with me talking directly to her. Even super smiley and laid back...until something triggers her. She's just really sensitive today. She nearly started crying again when the Mickey Mouse Club song came on! Ryan spiked a fever this morning so we decided to keep Reagan upstairs in her therapy room to try to keep him from infecting her. She dozed off shortly thereafter. Ryan was running a 102 fever and super lethargic/sickie. Mike's sister's and kiddos/husband came over to go swimming around 11am and Ryan just wasn't into it. He just moped around feeling miserable (even his ears were bright red from the fever). Finally he decided he wanted to get in and then his whole mood changed! He was smiling and having a ball! His fever obviously went down from being in the cold pool, and even though he was shivering, he didn't even want to get out! We finally got him out and he was much cooler. His whole class was sneezing last week and then on Friday two kids were out with fevers, so it's obviously something he picked up at school! Hopefully, it will be shortlived and he won't miss much school. We STILL don't have a Monday (or weekend) nurse, so I'm a little annoyed with that. Thankfully our night nurse is going to pick up part of the morning shift tomorrow, so that will help out a lot. Please say some prayers for both of our kiddos tonight! I'm not really sure what to expect tomorrow...

Saturday, May 2, 2015

Sweet laid back girl

Reagan slept well last night and woke up super sweet this morning. She was very laid back and didn't really seem sensitive at all, so we decided that it was safe to take her to her cousin's bday party. She did well with all of the commotion and nothing seemed to phase her (although she still really wants her hands in her mouth and her left had is starting to have skin breakdown from being damp). Ryan had a blast playing outside with water balloons and cars and even ate some Bratwurst (it's rare to ever get him to eat meat)! Once we got home, everyone took baths and Ryan was in bed before 9pm (early for him), since he only took a 5min nap in the car! Both Mike and I noticed a bit of bad day smell on Reagan's head, but otherwise she's been good. Still having lots of chorea (more bursts of crazy kicking today) and temperature regulation issues. Hoping my girl can hold it together and continue having a great weekend!

Friday, May 1, 2015

Busy morning, laid back afternoon

Reagan slept well again last night but woke up a little earlier this morning...right around 6am. I guess she didn't need more than 9hrs sleep! I moved her to her chair around 6:30am and she was content to watch cartoons while I got a little more sleep! She's had a pretty good day today. She's still serious, making us really work for a laugh or a rare smile. She's been a good girl though. She had speech early this morning and then right afterward we jumped in the car to drop Ryan off at school and then run in for a quick dermatology appt. She has a mole on her right hip that seems to have gotten bigger over the last year or so. The doctor said it looks fine though, so we're just going to keep an eye on it (she took measurements)! Busy morning, but a very laid back afternoon. Tonight I definitely noticed an increase in her chorea and some temperature regulation issues. Lots of kicking with those little legs makes for a sweaty girl! Hoping for another good night's sleep for my girl and a laid back weekend.