Friday, November 30, 2012

Miserable boy, girl on edge

It was a rough night last night. Thankfully Reagan slept most of the night, but Ryan (and Mommy and Daddy) did not! Ryan ran a fever of 101-102+ all night long and even when he was sleeping, he was moaning! He woke up every hour or so and I'd have to get up with him. A couple times I brought him back to our bed, but he wasn't comfortable there either. Poor little guy. This morning his fever went away and I thought maybe we were in the clear, but that was short lived and it came back quickly. It's difficult just getting him to take the tylenol and ibuprofen but there is NO getting the Tamiflu into him. I took it back to the pharmacy and had flavoring added to it last night but this morning when I mixed it with yogurt, he immediately tasted it and then refused to eat the yogurt. I tasted it and I don't blame him!! I nearly threw up myself, it tasted so awful! I'm not sure how anyone is able to get their child to take Tamiflu in the liquid form! I'm just glad we're able to give Reagan hers through her tube! It's looking like Ryan is just going to have to ride it out, because Tamiflu is not getting in this boy!! He's still pretty miserable today. Very clingy, whiny, crying...after a long night, it's been a long day! Reagan has been OK today. She's still definitely on edge, but still smiling for the most part. She did have a HUGE meltdown this afternoon when her nurse tried to give her the iPad to play with! She started crying hysterically...just too much stimulation, I guess! She also almost lost it just from music playing on a commercial on TV! She is SO sensitive to music lately (especially piano)! Needless to say, this weekend is looking like it's going to be a peach! Please keep us all in your prayers!!!

Thursday, November 29, 2012

The FLU?!?!

Reagan slept well last night...waking up just around 6am (also Ryan's favorite time to wake up). She's been very similar to yesterday. Very vocal...I might cry any minute sort of vocal! She was this close to a meltdown multiple times today (a few of the times in response to MY voice...Daddy was loving that)...but she held it together and never shed a tear. Definitely on edge. Hoping to avoid a bad day...but even more so, hoping to avoid a SICK day! The biggest news of the day was that Ryan was more fussy than his usual whiny self (and you could just tell he didn't feel well) and he spiked a fever. So I ran him into the pediatrician, only to find out he has the FLU!!!! Yes, that's right...the flu! Ugh. Not sure how it happened. Maybe it's the endless stream of people coming into our house, or the fact that I take him everywhere I go every single day, or his Daddy not washing his hands...who knows?!?! And the thing is, I have it too! I started feeling some respiratory something yesterday and then today I'm full on SICK! I just can't believe it's the flu! As of now, Reagan is still looking OK, so please, please, please keep her in your prayers! We all started Tamiflu today so hopefully that will help everyone (but Ryan took one drop of it and then proceeded to puke his guts out...in his defense it does taste aweful...I'm glad we have capsules)! So please keep us all in your prayers! My little boy is still sporting a fever and just as miserable as can be!!

Wednesday, November 28, 2012

Vocal

Reagan slept well last night and woke up this morning raring to go! She's been a bundle of energy...moving around a lot, hands constantly up in her hair, lots of vocalizations (some of which are on the crazy side and make us worry a little)! She had speech (through the school system) and "school" today. She did OK for both. She did get a little yawny during speech, but she never really took a nap. She had a lot of gas today, but no poop, that is not until tonight!! (She wanted mommy to change it!) Poor girl! That really had to be hurting her tummy (she clenches and clenches and holds it in)!! She's a sweet girl though and I just hope she can hang on and continue to have good days. We have a night nurse tonight, so if she decides to wake up, at least we've got that covered!

This is the blob (a 6' foam bean bag chair Grandma ordered for her). It's HUGE!!! We may not keep it though, because it doesn't have a removable cover (a necessity with Reagan)!! If it looks like it will work well for her, we'll probably have to get the more expensive one that has a removable cover!





Tuesday, November 27, 2012

Sleep & smiles

Reagan finally slept last night!!!! On her own, without any clonidine, she fell asleep and then slept the entire night and almost the entire day! She was OUT! Her PT came at 2pm and she was just going to do a "caregiver education" lesson with her nurse and Reagan started stretching around and woke up!! I rushed in there to talk to her and try to make sure she was waking up happy, and my sweet girl smiled up at me just as precious as can be!!! She had a HUGE wet diaper! Poor girl. She actually did great with PT and then fell back to sleep only minutes after finishing! (So she wasn't even awake a full hour!) She slept the rest of the afternoon in her chair and then we transferred her back to her bed where she continued to sleep til right around 9:30pm, when she decided to wake up and grace us with her presence!! She's still smiling, but she's yawning so she should go back to sleep soon! I'm just glad she finally got some much needed sleep (and when she did wake up, she was smiling)!! Now, I'm just hoping she'll wake up tomorrow with more smiles for us!!!









Monday, November 26, 2012

Rough nights

I'm not really sure what's been going on lately with Miss Reagan. She's been good during the day, not overly happy, but content. Still a few little things off like temp regulation or chorea (although that was improved today), but her nights have been WAY off! Last night she went to sleep and then woke less than an hour later crying! Again! Daddy tried to calm her down but it just wasn't working, so we moved her back into the living room and put her in her chair, where she promptly stopped crying! She eventually dozed back off but that was short lived. She'd doze for a minute or two and then wake up flailing (and wiping her face) for 8-10min, over and over and over. Finally I put her arm in a restraint just to keep it out of her face and that seemed to calm her a little. She still didn't sleep though. And she didn't rest today either! Poor girl. She's got to be exhausted! She was a good girl today. Her OT went on and on about how well she did this morning and then this afternoon she had vision/OT through the school system! She's been smiley all day...but oh so gaggy! Lots of coughs and gags but no throw ups all day...that is, not until tonight! Tonight she threw up A LOT. I drained her tummy, but that didn't seem to give her any relief. Tonight we switched back over to pedialyte. We've had to do that once a week for the last couple weeks. Not sure what's causing the increase in nausea! Her doctor did order labs the other day to check her blood Nortriptyline levels and they were undetectable! (Nortriptyline is what she takes to help with the cyclic vomiting.) So despite taking a pretty high dose of Nortriptyline 3x a day, it's not showing up in her blood! His suggestion was to increase her dose, so this week, that's what I've done (of course that also means we'll have to go back in for blood work again to check her levels). Hopefully we'll see an improvement in the nausea department. And more importantly...hopefully we'll see an improvement in the sleep department! My girl needs her rest!! Thank you for keeping her in your prayers!

Sunday, November 25, 2012

Fussy sleep

Reagan had another fussy night in the sleep department! I have NO idea what's going on with this girl! Well, actually I have an idea, but this is still so unlike her! She doesn't typically have good or decent days and then have bad nights (maybe sleepless, but not fussy)! When I got up with her she was having a lot of gas (and she's had quite a bit today), so maybe that was hurting her?!?! I don't know. She slept til about 4am and then woke fussing. I got up, but it took Daddy to finally get her settled down and back to sleep! She's been good today though. Overall smiley, some crazy laughs, but lots of chorea and cold, clammy hands and feet (and a hot, sweaty body). I also drained quite a bit of fluid from her tube...so sometging is definitely going on in thst tummy of hers. The line between good and bad days has definitely been harder to spot lately. We are having far less (or maybe none) 100% good days and far too many bad/off days for my liking. She's also really chewing on her hands. She has a couple new bite marks on her left hand...obviously nothing done on purpose, but when you're constantly chewing on your hands, you're eventually going to nip yourself! What can we do?? I bought her a chewlery necklace. She does hold onto it and chew on it occasionally, but she still prefers her fingers. I'm hoping for a good week next week! She's missed lots of therapy with the holidays, so hopefully she'll be able to catch up and have a productive week?!?! Praying for sweet dreams for my girl tonight!
(**Update-No such luck! It's 2am and I'm up with a fussy, flailing girl! Pray that we can get to the bottom of this!!**)

Saturday, November 24, 2012

Deja vu-ish

Reagan had another rough night last night (and so did we). It was a little deja vu-ish. She started getting a little agitated the later it got. She eventually went to sleep but woke up crying and upset again. She wasn't calming down so we moved her back to her chair where she finally settled down and went back to sleep! We're not really sure what was bothering her, but she did have two very liquidy diapers this morning...so my guess is tummy pains. She does seem to be feeling a little better today. She wasn't crazy about being laid down for diaper changes, but other than that, she was pretty easy going. We had some smiles and quite a few crazy laughs as well. We attempted to put up our Christmas tree today, but after finding out that something was living in the box and we had more lights out than we did working (and Mike couldn't fix it after hours of trying)...we decided we have to get a new one. I'm not sure how long they are supposed to last, but I guessing longer than this one did. Anywho...maybe we'll get started on Christmas tomorrow! I sure hope my girl gets some rest tonight!!

Friday, November 23, 2012

Fussy night, decent day

Reagan didn't have such a great night. She woke up crying (like she was in pain) and not even Daddy laying down with her could calm her down! It wasn't until we put her in her chair that she finally settled down and went back to sleep! When she woke up this morning, she was still pretty fussy and just had a mad look on her face. She eventually mellowed out and had a decent day. No therapies or anything, but she did go swinging outside for a while. Her brother has been quite the terror today...up crying a lot last night, whining all day long, super needy...I hope it's just teething and going to pass because he's driving me nuts (and I'm pretty sure his sister is thinking the same thing)!!! Hopefully tonight will be a little more uneventful for my girl and she'll pull it together and actually have a good weekend! We could all use some good days!

Thursday, November 22, 2012

Thankful

Reagan slept like a rock last night (thank you God)!! She woke up this morning tense, but not crying. She did not like having her diaper changed today (or a bath) but other than that, she didn't fuss at all today! It was really the best case scenario we could have hoped for. Yesterday was only her first "bad day" so today could have been SO much worse! She was very serious and a little agitated this morning, but she handled the change of scenery well, letting us hold her and not freaking out with all the noise and commotion of Thanksgiving festivities!! Definitely something to be thankful for. When we came home tonight, I gave her and her brother baths, and then both of them were asleep within the hour! I'm hoping for another good night's sleep tonight for everyone! Thank you for keeping our girl in your prayers! Hope everyone had a great Thanksgiving!
(We're also thankful the Texans won!!!)





Wednesday, November 21, 2012

Bad days are back

Today has not been a good day for my girl. Despite sleeping the whole night through last night (of course...we had a nurse), she woke up this morning crying and spent most of her awake time today doing the same. Thankfully, she slept a lot. I'm not sure if it was the medicine (we tried the whole arsenal...clonidine, Lortab, Ibuprofen) or if it was just her body needing sleep. No therapies today but there were a few more labs her doctor wanted us to get on a "bad day", so we reluctantly loaded her up in the car and took her in for a blood draw. She cried the whole time and fought hard, but we managed to get it done and once home she fell back to sleep. When awake, she was a tiger. I was wiping her mouth with a wet washcloth and she tried to bite me! I managed to pull my finger out just in time...the washcloth wasn't so lucky!! I was forced to put her arm restraint on, as her poor little arm is still healing from last week! I'm still not sure what to expect tomorrow. I'm hoping she'll be out of the crying phase and able to at least tolerate Thanksgiving! We're going to Mike's sister's house and if Reagan is still irate, we may just have to eat and leave! Please keep our girl in your prayers! She deserves a happy Thanksgiving!!!

**I forgot to mention...we now officially have a crawler!!! He's been working on it for a while now, but today he took off (and headed straight for the electrical outlet)!! Boy are we in trouble!**

Tuesday, November 20, 2012

Freak out

Last night (right before bed) Reagan started freaking out! Yelling like crazy, all tensed up and flailing...it was hard to tell if it was some sort of pain or if it was something neurological. You know those movies where they show the people in the instituions yelling out constantly...that's what it was like. I don't know if we've ever seen her do something quite like this (at least not to this extent). She eventually calmed down and Mike was able to lay in bed with her and get her to sleep. She didn't sleep well though and she woke a couple more times, so it was a rough night for everyone (although it was Ryan's first good night's sleep in a while...8pm-4am). Reagan woke again around 5 or 6 and was quiet for the most part, just awake and kicking around. Today she has been similar to yesterday, only maybe a little more on edge/stressed. Maybe slightly less agitated by the television or music...but more agitated with interaction (although she did make it through OT & PT without any meltdowns). No more nausea today, so that's good. After switching over to the pedialyte last night she's been good. Not sure if that's what helped or if it would have gone away anyway? She was back to half strength formula this afternoon and tonight I'll go back to full strength. Her temperature is all out of whack! Her hands and feet are still very cold and clammy and her body is burning hot (so much so she's sweating through her shirt). Tonight she was in her chair and her face was bright red and she was all sweaty. I told Mike to pick her up to help her cool down...big mistake! She started up with the craziness and then wouldn't stop crying/yelling for a while. She finally calmed down when he put her back in her chair! You can't win with her! I'm not sure where she's going with all of this, but it's not really looking good for Thanksgiving. If she's going to have a rotten day, I'd prefer she get it out of the way tomorrow, instead of saving it for Thursday (actually I'd prefer no bad days at all, but I rarely get that wish)!! Please keep her in your prayers!!

Monday, November 19, 2012

Sensitive AND nauseous!

Reagan slept OK last night. I think she slept well until right around 4am when I saw her awake and kicking around. She wasn't fussy though, so we were able to leave her in her bed til 7. (I wish I could say the same for Ryan!) She continued to be sensitive today, so we had to be careful around her (she was not appreciatitve of the yard guys trimming the bushes outside her window)! She had OT this morning and vision therapy this afternoon and she did well for both! Her vision therapist actually said it was her best session yet!!! She's had several really big throw ups today. She's not gagging and retching nonstop (like she does sometimes), but when she throws up, it's a lot and it really wipes her out. I've also drained quite a bit of fluid out of her g-tube as well! Definitely switching over to pedialyte tonight! Then tonight I was about to give her a bath and I noticed her tummy looked bloated. I "checked" to see if she was stopped up, and she let out a ton of gas and another liquidy poop! Poor girl! That had to be hurting her! I still have no clue where this is headed and how our Thanksgiving is going to turn out! Please say some extra prayers for our girl!!!

Sunday, November 18, 2012

Too sensitive

Reagan slept pretty well last night. She did randomly wake up crying at one point, but Mike was able to get her calmed down and back to sleep. Her brother, has been quite another story! He has not been sleeping well at all lately. Waking up at least 4 times a night crying...I'm exhausted! I don't know if his teeth are still bothering him, if maybe he has more coming, or if he's got an ear infection or something else brewing...it's not good, whatever it is!! Reagan was good today for the most part. She's been smiley and cuddly, but she's also been super sensitive! She has had a few crying meltdowns...she wasn't a fan of us talking (or yelling at the football game on TV) and she also had two liquidy diapers that were probably hurting her tummy...so poor thing, she's been a little weepy. I'm hoping this is just a short phase...a hiccup...in the middle of her good days. Hopefully we aren't headed back in the wrong direction again! Her hands and feet have been cold and clammy at times today, but that happens on good days now as well. Please keep it in your prayers that she can hold out and have good days this week...especially for Thanksgiving! I'm not sure what we'll do if she's not having a good day. These were my favorites from the photo shoot!

Saturday, November 17, 2012

Happy girl

Reagan slept pretty well last night. She fell asleep without her clonidine and then slept through til 5am, when she woke and was wide awake! I gave her a half a dose of clonidine and she fell back to sleep and slept til 8:30 or so. She's been super sweet and smiley today. She was vocal at times and constantly chewing on her hand or playing with her hair! Poor hand! It's just covered in scabs from all the biting she did last week! She has four different bite marks on her wrist/hand and then another on her pointer finger! Poor thing! There were a couple of times today when a loud toy (or loud brother) seemed to overstimulate her and you could tell she was getting upset, but she held it together and was a good girl all day!! I took her for a walk and we got in some good snuggling today among all the football! Hoping to see more of this happy girl all week!









Friday, November 16, 2012

Smiling once again!

Reagan slept all night last night and woke up at 6:30am SMILING!!! She's been a good girl today! Very smiley, much more calm, and just overall happy! So good to finally see her back to her happy self! She only had one therapy today, PT first thing in the morning. She did great for it and then spent the rest of the day just hanging out. She was a little groggy off and on, but she was awake and alert for the majority of the day. The red patch that had appeared on Wed afternoon is already completely gone! I did put some coconut oil on it immediately after we saw it, then she slept all day yesterday, and  now today it looks great...so no complaints! (I didn't even have a chance to use the new prescription the dermatologist gave us!) Tonight Reagan dozed off in my arms smiling! Such a sweetie! Looking forward to a great weekend with my girl!



Thursday, November 15, 2012

Finally sleep!

Reagan was awake all night last night. Thankfully her night nurse was here. She'd doze off in her arms and then startle back awake, thrashing around like crazy! She was very tense, but at least she wasn't nauseous anymore. She finally fell asleep at 6am and then proceeded to sleep the majority of the day (in her chair)! Finally at 2pm we took her out of her chair and changed her diaper...she stayed asleep. Then around 4:30pm she started rolling and thrashing around. She was smiling, but still acting a little crazy. She was making a lot of vocalizations and then we noticed she was on the verge of tears. I think she was having tummy pains. Eventually she got over it and was OK again. Then around 7:30pm, she dozed back off. Right now she's in her bed, making sucking noises with her tongue (so cute)!! I really hope she wakes up tomorrow and is FINALLY back to her happy self! This has been a loooong bad streak! I'm ready for some good days!!

Wednesday, November 14, 2012

No sleep and nauseous

Not a lot of time to post...it's been a busy day! Today is my birthday. My mom and my sister "flocked" me (see picture below)! That definitely made me smile! What didn't make me smile was the night and day that my girl had! Reagan was up almost all night last night. Flailing and kicking around, rubbing at her face (even with the restraint on...hence the red nose today). She fell asleep a few times when Mike was restraining her, but it was short lived and the second he would move, she would wake up. So no one got much sleep last night. Then to top it all off...she's been super nauseous today (and still tense and flailing). It started first thing this morning. We had just changed her out of her pajamas (that were sweated wet) and she had a HUGE throw up that got all over her entire new outfit we had just put her in! She's been overall very nauseous all day, lots of gagging and retching, and she's had several more big throw ups. I hooked her up to a drain a few times today and drained out lots of yellow bile. Tonight she's switching over to Pedialyte. I'm hoping and praying that she finally gets some much needed rest tonight and wakes up happy with no nausea! Please continue keep her in your prayers!

Tuesday, November 13, 2012

Biten

So, Reagan didn't have that great of a night last night. She fell asleep on her own and Mike was able to get her to bed, but she woke fussing just as we were about to go to bed at midnight. I gave her a dose of clonidine and he eventually got her settled down and she went back to sleep. She woke again at 5am and was flailing around and fussing so we went ahead and put her back in her chair and I gave her some Lortab and she went back to sleep. She woke again at 7am (I think the beeping coffee pot woke her up) and she was still flailing a lot but not fussing. I noticed in addition to the big bruise around her left thumb, she now had a scratch (bite?) at her wrist and another about 2-3in above her wrist. We haven't had her arm restraints on her because she hasn't been bitey and she also hasn't really been fussy in several days so it seems odd that she would be biting all of a sudden! Then this morning her OT came and worked with her. We talked to her about possible solutions for her need for chewing (like a chewlery necklace)...because even on good days she's got her left fingers in her mouth or hair and her right hand grabbing her shirt! After she left Reagan was on the floor just kicking around in front of the tv and I was sitting beside her with Ryan. All of a sudden she started fussing a little and I look down and she's got a bandaid in her mouth (that I had put over the other scratch/bite)!!! So I looked down at her arm and there was a huge bite! Ugh. What are we going to do with this girl! There was no warning whatsoever...she didn't fuss until she had already bitten herself! I really think it's just her way of dealing with pain. She's having some sort of pain and the only thing she can do is BITE! It certainly doesn't make matters better...it's just what she does! She's also crunching in half a lot (making her tube leak)...I wouldn't be surprised if it wasn't some sort of stomach pain! Poor thing. And the chorea is crazy! Lots of kicking and flailing...again, I think because of the pain. Poor girl. I'm so ready for this bad streak to be over!!!! Praying she'll get a good night's sleep tonight and wake up much happier tomorrow!

 

Monday, November 12, 2012

Still off

Reagan slept fairly well last night (even though she was still in her chair). She did wake up and flail around every now and then. She's been better today than she was yesterday. No fussing at all, but still very serious. No hint of a smile. Very cold, clammy hands and feet. We noticed today a big bruise on her left hand right around her thumb. I guess she bit it? LOTS of chorea. Legs kicking nonstop. This isn't necessarily a bad thing. I know it's a lot of movement but it's almost like her own form of exercise. I remember a very compelling study that illustrated the importance of exercise in mitochondrial disease. There was a picture of these mice, mice that had been genetically altered to have mitochondrial disease. Half of them were put in a cage without a wheel, so they were unable to exercise, the other half had a wheel and would get on it and run around each day. The difference between these two cages of mice was staggering. The mice that exercised looked completely normal and healthy...the mice that didn't exercise were missing tufts of hair and they very weak and feeble, they would even fall over when they tried to walk! So, maybe these annoying seemingly unpurposeful movements (chorea) that plague Reagan, do in fact serve a purpose for her?!?! I'd like to think that's the case. Despite still being off today, she did make it through both vision and speech this morning without any problems. Then we headed into the med center for a dermatology appt about the recurring red patch she keeps getting on her bottom. Of course she doesn't have it right now, but we made the appt weeks ago and I've got pics of it, so we went. Not a lot of information. Dermatitis. Sure I could have guessed that. We got a prescription for something to try next time we see it. Reagan was pretty mellow the rest of the day (other than her legs kicking and arms flailing around her face and pulling her hair), that is until tonight. She fell asleep on her own and went to bed without a problem, then just as we were getting ready to go to bed at midnight, she started flailing around in bed and freaking out. Hopefully we can get her to settle down and go back to sleep! Thank you for your continued prayers for our girl!

Sunday, November 11, 2012

Still fussy but not crying

Reagan and Ryan slept surprisingly well last night. Reagan fell asleep on her own but then right around 1am woke crying. We gave her some clonidine and she fell back to sleep. I don't remember her waking up at all, maybe the occasional fuss, but I'm pretty sure she never actually woke back up til morning. Ryan was also amazing in the sleep department last night. He slept from 8pm-6am! Now when I say "slept", I mean he never fussed and I never had to get up and nurse him...but I'm not sure that he actually sleeps the whole time!! I've seen him wake up before, play, and then fall back to sleep on his own! That's actually what he was doing when I saw him at 6...he was awake and talking in his crib! The only reason I picked him up is because he hadn't eaten all night and I didn't want him to start fussing and wake up his sister! Reagan was still very cranky when she woke up. Not really crying, but fussing a lot and SO tense. She particularly hated us getting anywhere near her! When I would go to give her her medicine, she would immediately start up, but she was fine as long as we kept our distance! This afternoon she had probably the biggest blowout diaper I think she's ever had! Mike heard it coming so we picked her up immediately, but it was already bubbling out! It was everywhere!! We wiped her down and then just took her straight to the tub! Afterward she seemed to settle down a bit and then got a little sleepy. She woke up fussing just as we were about to leave for our anniversary dinner (today is our 12th wedding anniversary), I gave her a dose of Lortab and she relaxed and fell back to sleep. When she wakes up she's flailing a lot and frantically wiping at her face. We've managed to avoid using the arm restraint this go round, she was still putting her hands in her mouth a lot (and chewing on her thumb), but she never bit herself (sometimes it seems the restraints just make her even crazier). We came home from dinner to find both kiddos asleep! I'm about ready to do the same! Thank you for your continued prayers for our sweet girl!

Saturday, November 10, 2012

Bad day

Reagan has had a horrible day. She slept well but woke up on edge and about 30min later had her first meltdown! It's been rough. She was crying more than not and not sleeping as much as we'd hope. Medications didn't even make a dent today (Lortab and Ibuprofen did nothing and Clonidine only worked for an hour or so). Poor girl. She's spent most of the day in her chair. When you hold her she fights you nonstop and is so tense and rigid, you can barely hang onto her! My mom is actually looking into getting her a foam bean bag chair...a giant one that she can kick around on and even sleep on! I'm interested to see how that works out, because she just gets so hot in her chair and I'm afraid she puts too much pressure on that one area of her bottom. Maybe this will work well for her. Right now she's laying in her chair asleep. There's no chance of moving her (we've already tried), so we're just going to hook up the video camera on her and hope she sleeps through the night and wakes feeling much improved tomorrow. Please keep our girl in your prayers!!

Friday, November 9, 2012

Tense but hanging in there

Reagan slept fairly well last night. I was up multiple times with Ryan and she seemed to be asleep most of those times. At 5:30am however, she was awake and I don't think she ever went back to sleep. She was quiet until right around 7am when she started crying. Mike went in and was able to calm her down...she was awake but quiet. Then at 7:40am just before Mike left, she started crying again, but this time he was not only able to calm her down, but she went back to sleep! She slept til right around 8:40am when Ryan woke her up with his happy screaming! She woke fussy, but she calmed easily and then actually was calm most of the day! She's been on edge, hands and feet ice cold and clammy, lots of chorea, but calm and even smiling a little. We even took her outside on the swing for a while. She's still very tense...tonight she freaked out because of an iPad mini commercial (piano music). I've noticed in the past that she doesn't seem to like the piano, but this confirmed it! I'm not sure if it's only when she's on edge or all the time?!?! I have no clue where we're headed, but it sure would be nice to skip the bad days this go round! I would LOVE for her to be able to go to this birthday party on Sunday (for her speech therapist's daughter) at Build-a-bear! Please continue to keep her in your prayers!!!

Thursday, November 8, 2012

On edge

Sleep last night was about the same for both kiddos. Reagan slept most of the night and then woke early and didn't go back to sleep, Ryan woke up several times (each time I had to get up and feed him til he settled and would go back to sleep)...not a good night for mommy! Reagan is still smiley today but she's definitely on edge and has had a couple meltdowns...we've been walking on thin ice with her. Mike came home for lunch and just talked to her and she broke down into tears. Then again tonight she had another meltdown. She hasn't liked us talking and she particularly doesn't like Mike talking! I'm not sure what's going on with her, but it doesn't look good. She's had super cold, clammy hands and feet today and those legs are kicking nonstop! She did manage to make it through school and speech today without a problem, so that's good. Her PT has already canceled for tomorrow and we lost the OT that was coming on Fridays, so not a lot going on tomorrow! I know it's unlikely that she'll skip the bad days, but I'm certainly hoping for another mild/short stretch again! Please keep my girl in your prayers!

Wednesday, November 7, 2012

Trouble makers

Reagan slept pretty well last night, but she woke up early and never went back to sleep! She's been a good girl again today. She had speech and school today and did well for both. She's still smiling but still spunky at times (lots of moving and loud vocalizing that sounds like it could go the wrong way)...and she did nip at the new nurse! Not sure where this is going. I'm hoping she'll hold on and continue with good days, but it definitely looks like we're headed in the wrong direction. We've got big plans for Sunday (Reagan is supposed to attend a birthday party and we're attempting to get out for our anniversary), so whatever happens, I sure hope she's good by then! Ryan just cut his first two teeth yesterday, so he's been a handful (resisting naps, waking up multiple times a night, drooling like crazy)!  He's doing all kinds of new things though, so that's exciting! Last week we noticed him sitting up in bed (we had never seen him go from laying to sitting before)...now he's doing it all the time (especially when he's supposed to be sleeping). He's still not "crawling", I'm sure from the lack of tummy time because of reflux, he makes some progress but then ends up laying on his tummy wanting to be picked back up! He mastered his walker a couple days ago and he's all over the place now (before he was only going backwards)! Now he's terrorizing the dog, pulling things off tables, getting into the trash...he's something else. He's also pulling up to his knees...he'll be standing soon! Very exciting stuff!!! Please keep both of these trouble makers in your prayers!

Tuesday, November 6, 2012

A bit spunky

Reagan has had a bit of a crazy day today. She slept all night and woke up this morning at 7am. She has been quite energetic all morning and vocalizing a lot! She had OT this morning and did really great for that, then she dozed off and took a little nap but woke just in time for PT. At the end of PT we put her in her stander. She did fine with that even though it's been a while since she's been in it (we've got to be better about putting her in it), but we took her out after about 45min because we thought we smelled poop! It was just gas, but it gave her a little time to rest before her vision therapist got here. She got very vocal again when her therapist was working with her (so much so we thought we might need to take her out of her wheelchair), but she calmed down and finished vision therapy without a problem. Both her vision therapist and her OT both commented on how good her eye contact was today. She's definitely been a bit spunky, but she's continued smiling...so I'm pretty happy about that! Praying for more happy days for my girl!!!

Pics from Saturday...just too cute not to post!

Monday, November 5, 2012

Sleepy day

Reagan slept well last night and then continued to sleep all day today!!! She woke up twice, once for about an hour in the morning and then again tonight for an hour or so. She was smiley when awake this morning and very vocal when she woke up tonight (almost sounding a little on edge). I'm glad she got some rest...she obviously really needed it. Hoping for a happy, awake day for my girl tomorrow!

She spent the day sprawled out...fast asleep (but rolling every now and then)!



Tonight asleep in her chair!



























Sunday, November 4, 2012

Snuggly girl

Reagan has been such a sweetie today. She slept well last night, that is, until I got up with Ryan at 4am. When I got back in bed, she was moving around and she never fell back to sleep! She was a good girl though and she let us sleep! She really couldn't have been any better today. Lots of smiles, very snuggly...just a total doll. Every time I picked her up and we snuggled, she'd doze off! Oh how I love that girl!!! Brother was a turkey. Fighting sleep...he didn't want to go down for his last nap tonight. Then he woke up ~2 hrs after I put him down and he just sat in his crib playing and then he laid back down and went back to sleep! He's trouble! Praying for continued good days for my sweetest girl (and a better night's sleep)!!!


 Those two top teeth are so wobbly (especially the left one), but they are hanging in there!

Saturday, November 3, 2012

She likes to move it, move it!

Both kiddos slept better last night. I think Reagan slept the whole night through and Ryan only woke up once before 7, so that's good (oh, I forgot he woke up 30min after I got him back down so I gave him some Tylenol...maybe that's what worked?!?!). Reagan has been in another great mood today. She's still making the occasional vocalizations that sound like they could go the wrong way, but she's kept a smile all day and tonight she's even giving us laughs!! She was a little nauseous first thing this morning when I was changing her diaper, but she's been fine the rest of the day. I'm still wondering if the Nexium shortage issue has been rectified. Our pharmacy hasn't had the oral suspension packs (that we use) for months! We already tried switching to Prevacid but that was a massive fail!! I managed to call around and find a pharmacy 20 min away that had a stash of it, but I think we've finally tapped that out! We've got another 30 days worth that we got from the doctors office, but once that runs out, we're in trouble. From what I can tell, it was supposed to be available again by October, but I guess we won't know for sure until we try ordering it from our pharmacy again! Reagan has been moving A LOT today (I'm watching her right now moving, moving, moving)! I tried to get some pics of her and her brother today wearing their Baylor outfits and almost every picture of her was blurry because of the nonstop movement! And she's chewing on her hand or shirt the whole time too, so that's just another thing to contend with. Hopefully she settles down and gets some sleep tonight! (Hopefully we ALL get some sleep tonight!)

FYI...I did my undergrad at Baylor!
Ryan has HAD it!!

Friday, November 2, 2012

Sleep troubles

Reagan was up a lot last night (thankfully our night nurse was here). Unfortunately, it was much of the same with her brother. Ryan has been waking more and more often at night (which is killing me). Tonight he's fighting it even harder and waking back up every hour and crying. I'm thinking (hoping) that maybe it's teething. I sure hope there's a good reason for this! Despite not sleeping well, Reagan has actually had a really good day today. She's been very sweet, with little smiles and laughs! She had a great session with PT this morning and then had OT right after! She's been pretty calm all day (her heart rate was in the 100s...which is low for her) but every now and then she'd make the occasional noise (and I couldn't really tell if it was good or bad, but she never got upset, so I guess it was OK). Tonight she seems to be a little more active and "kicky"...but still good. I'm hoping she'll settle down and fall asleep...maybe with the help of clonidine. If Ryan wakes again, he's getting some Tylenol! Hoping everyone gets some sleep tonight!

Thursday, November 1, 2012

Not so bad

Reagan slept well last night (without any clonidine). She woke at 5:30 and was calm, her night nurse changed her and she fell back asleep. Around 7:15am she woke fussing, so we gave her clonidine and she fell back to sleep. She woke up calm...she was definitely improved today, hardly any crying or fussing, so overall a very mild bad day! She was very drowsy (without any pain medications), but that's actually a good thing on the second day of a bad cycle (the only mishap was bath time when she started fussing). Tonight she fell asleep on her own again...praying tomorrow will be even better for my girl!