Tuesday, April 30, 2013

Sleepy girl

Reagan slept well last night. She slept in a little this morning, but then woke up happy and smiley around 9am. She had a big dirty diaper right away and then was very calm and relaxed afterward. Legs still, hands down by her side, very unlike her. She was a little gurgly in her throat, so when her OT came at 10, we skipped the oral/feeding. We did take advantage of her reduced tone and her OT put her AFOs on her during therapy. She made it about halfway through OT before falling asleep. She then proceeded to sleep the most of the day finally waking up around 4:30pm. She woke up happy and giggly, so we took her and her brother for a walk. I did notice that her movements picked back up after our walk. Her hands were in her mouth and she was kicking her legs so much she kept turning sideways in her chair. She calmed down considerably when I picked her up and she had even dozed off right before the night nurse got here. She woke up the second I stood up with her and then she had a second wind and was giggling and bright eyed for the nurse. She finally settled down and fell asleep with the help of clonidine and Daddy cuddling with her. Hopefully she's able to sleep tonight and she has a good awake day tomorrow!

Monday, April 29, 2013

Better day

Reagan slept OK last night. She woke a couple times fussing but Mike was able to go in and get her back to sleep (he said she kept rolling over onto her tummy and then getting stuck). I was a little worried and not sure how she was going to wake up today, but she actually ended up having a pretty good day. She was a little serious and tense when she first woke up, but she loosened up quickly and was even giggling for us. Lots of things going on today...OT this morning, vision/OT at noon, and then school at 3! Busy, busy. She did really well for everything. I'm so glad she seems to be feeling better. It was a rough weekend...it's been a while since she's had such a tough couple days. Definitely glad to be done with it. Hopefully now she'll have another long stretch of good days! Brother is finally getting over his teething woes. He's still a major handful (today he escaped out the front door because one of the therapists didn't close it all the way...we caught him just before he got to the step). Definitely a walker now (no more crawling)...and a climber. Today he climbed up into Reagan's wheelchair. Yesterday he was climbing into the stroller. Opening every cabinet (even with the baby locks) and somehow managing to pull things out. Pulling things off shelves and grabbing things off counters. Can you say TROUBLE?!?! He's lucky he's so cute.





Sunday, April 28, 2013

Not over yet

Reagan slept well last night and woke this morning seemingly better. She was even giving us some laughs. We thought we were in the clear. We thought the bad days were over. We were very wrong. Once the crying started, it seemed like it would never end. She was holding her breath and turning purple, time and time again! I suspected tummy pains so I helped her go to the bathroom...it wasn't much, but it was hard and probably hurting her. Poor girl. It didn't help the crying though. And neither did the Clonidine or Lortab which were so helpful yesterday. She did finally settle down this afternoon/tonight. She was still very stressed and tense, but at least she wasn't crying. She did NOT like me talking though. Every time I said something to Mike (or Ryan), she'd start getting upset. She didn't mind Mike talking, it was just me! I'm hoping she sleeps tonight and wakes up feeling much better tomorrow.

Saturday, April 27, 2013

Miserable girl

Reagan slept well last night but woke unhappy this morning. It's been a full blown bad day for my girl. She slept a lot thanks to alternating Lortab and Clonidine, but when she's awake, she's miserable. Arms flailing around, pulling her hair, crying real tears...I hate to see her like this (even brother was worried about her)! It's been so long since she's had a real bad day. The last one was 3 weeks ago but it was a mild one and so was the one before that. I still think it's all tummy related. She had a huge dirty diaper yesterday (because she's been holding it in) and she probably needs to go some more. I'm hoping she'll sleep tonight and wake up feeling better tomorrow! Please keep our miserable girl in your prayers!

Friday, April 26, 2013

A bit off and a little sleepy

Reagan didn't sleep the night through again and the night nurse was holding her this morning when I got up. She was in a good mood though and very smiley and sweet. Still spitty and a little chokey. She was pretty laid back all morning. She didn't have any therapy today, so it was a bit of a lazy day. This afternoon as we were trying to feed her, she kept closing her eyes like she was trying to fall asleep. She ate about half a container of food and then she dozed off 30min or so later. She slept several hours and then woke up around 7pm...but she was not happy. I was able to change her diaper, but she didn't want us to interact with her at all. No talking, no picking her up, definitely not amused by her brother's antics...nada. She just wanted to sit in her chair with her hands in her mouth! They've been in her mouth so much today, they're all shriveled and everything is starting to smell like spit! I'm not sure where this is headed. We've been smooth sailing for quite sometime now, but she has seemed a bit off the last couple days. Not sleeping as well, cold, clammy hands and feet (sweaty back), and spitty. I'm hoping it's nothing. Prayers for my sweet girl to continue her good day streak!!

Thursday, April 25, 2013

Wonderful girl

Reagan didn't sleep great last night. She woke up and the night nurse had to pick her up and try to get her back to sleep. She did finally go back to sleep, but when I got up she was already wide awake and smiley. She's been a WONDERFUL girl today. So smiley and so sweet! A few temperature issues and a little spitty and gunky in her throat, but nothing unmanageable. We didn't have a nurse and I was definitely worried, but Reagan was a piece of cake. Her brother, on the other hand, was a complete disaster! I don't know if it's teething or what, but he has fussed and cried off and on all day today. Refusing to take naps, throwing fits...it's been a fun day. Our sweet neighbor came over this afternoon to lend a hand. I don't know if I've ever been so happy to have him down for the night! Hopefully he stays down...he seems pretty restless! His sister fell asleep and then woke 30min later...wide awake! I just gave her some clonidine so hopefully she'll doze back off! I go to bed with a heavy heart tonight thinking of two families who have lost their little ones to mito. Talon who passed away suddenly not even a week ago and Cooper who passed a little over two years ago. Please pray for both of these families as they try to do the imaginable...continue on in a world without their little loves.

Wednesday, April 24, 2013

Less crazy

Reagan woke up around 2am last night...thankfully our night nurse was here. She picked her up and held her and eventually she fell back to sleep...so she just held her the rest of the night. She's been a good girl today. Less crazy than yesterday, which is a good thing. There were a few times where her brother's temper tantrums were beginning to agitate her, but she handled it well. She's been sweet and smiley all day. She had speech and school today and she did well for both. She's still super tense in her body and she was a little gurgly in her throat today so I didn't feed her. Her temperature regulation was way off tonight...ice cold hands and feet but she sweated through her pajama top! She wasn't looking sleepy tonight so clonidine came to the rescue again! Praying for good sleep (for everyone) and a good day for my girl tomorrow (especially since the nurse has already called in sick and I'm going to be flying solo tomorrow)!! Time for this mommy to get some sleep...

Tuesday, April 23, 2013

Hint of crazy

Reagan slept fairly well last night...she woke around 5:30am, but then dozed back off an hour or so later and slept til 8. She's been a good girl today with a hint of crazy! Every so often she'll let out a squeal that lets you know...I could freak out at any moment if you don't play your cards right! She kept it calm though and some how, some way we avoided a meltdown today! She was less excitable this morning. She had OT & Speech and she did well for both. I fed her an entire container of pear strawberry granola baby food and she seemed to enjoy it! Who would ever thought, my girl...an eater! Afterward, we went on a long walk with Grandma...two miles through the neighborhood (a little too long for my taste)!! Ryan loved it at first but was clearly fed up at about 1.25miles. Ryan just cut his two upper lateral incisors and boy, he's been a piece of work! I'm hoping he settles down over the next couple days otherwise he's going to be crying it out very soon! Reagan was definitely escalating as the day went on (more crazy squeals). I tried giving her some Lortab around 7pm...it didn't do a thing. She was still wide awake and still very high strung. Tonight just as the night nurse was getting here, she started getting more agitated. I gave her some clonidine and thankfully that settled her down and she fell asleep. She doesn't appear to be in a very deep sleep though, so I'm hoping she's able to get some rest tonight. This is definitely one of those nights I'm glad we have a nurse here...just in case!

Monday, April 22, 2013

Sleepy girl

Reagan slept better last night...and then she kept sleeping and sleeping! She slept until 11:30am when I went in to check on her again and found that she had leaked through her diaper (but was still asleep). She woke up when we were changing her and thankfully, she woke with a smile on her face! She's been a good girl today. Very "crunchy"...bending at the waist, hands up in her hair or mouth, body tense...but she's had a great disposition. She was awake from 11:30-2:30. She had a good session of vision therapy/OT and then dozed back off shortly thereafter. She slept til about 7pm when she woke again with a leaky diaper and a smile! She was wide awake from 7-11pm, so much so we were afraid she might not sleep tonight. She was looking at me tonight, making such great eye contact and vocalizing like she was trying to talk to me...boy, do I love this girl. But she did finally doze off again on her own (it's been over a week since she's had any clonidine at all)! I'm hoping she'll get a good night's sleep tonight and wake up more alert and smiley again tomorrow! Please say a prayer tonight for Talon's family. Another little one sent to heaven way too soon because of mito...

Sunday, April 21, 2013

Hanging in there

Sleep was not great last night for Miss Reagan. She slept, but she was restless and woke fussing and Daddy had to go in there and calm her down. When she woke up, I could hear her pump beeping (I was assuming it had just gone off)...but what I later realized, it must have been beeping for hours (poor girl, no wonder she couldn't sleep) because there was way too much formula left in her bag this morning (meaning it hadn't been running). Ugh. Always something. She woke serious but calm and although she gave us the frowny face several times this morning, no major meltdowns and it turned out to be a pretty decent day. She's still off. A little drowsy and super tense in her body...cold, clammy hands and feet. But she was a good girl. She had a make up session of speech and she did well with that and then Mommy fed her an entire carton of apple cinnamon oatmeal baby food!! She wasn't too interested in eating yesterday, but today was a different story! I'm still not sure which direction we're headed...but Grandma is here so I'm hoping she continues to have good days!!

Snuggling with Mommy tonight


He climbed up there himself! 


Trouble

Saturday, April 20, 2013

Sensitive but good

Reagan slept last night...as far as I can tell. I was up a lot with her brother. He had been sleeping better the last few nights (waking only once) and then POW last night he woke up several times again. Exhausting. I did notice the last time I got up with him that Reagan was moving around a bit in her bed, but she was quiet, so I left her. When I got up at 8am, she was wide awake. She's been a good girl today. She was still a little groggy this morning (reminiscent of yesterday morning), but she perked up a bit as the day went on. She was sensitive to Daddy's voice this morning...he tried to talk to her and immediately she teared up and gave the frowny face...but she settled down without crying and was fine the rest of the day. That is, until tonight when I saw a roach creeping across the floor by her chair! I let out a squeal and jumped up in the air, and Mike (who is deathly afraid of these things) ran over and squashed it with a shoe! With all of the commotion, I didn't notice that Reagan was totally freaked out (probably my fault) and she had a frowny face that quickly turned to tears! Poor girl. She was upset...with mommy in particular! Daddy was able to calm her down and then she was fine the rest of the night. Other than those two incidences, it was a pretty good day for her. Her hands and feet were cold and clammy, but she was content and even giving us little smiles. Not sure where we're headed. This is uncharted territory. I'm hoping we're headed back toward good days (and so is Grandma, since she's driving in tomorrow morning)! Thank you for keeping our girl in your prayers...

Friday, April 19, 2013

Calm but out of it

OK...so I'm not really sure what kind of day today was. Good day? Not so bad bad day? Fighting off a bad day??? No idea. The night nurse told us this morning that Reagan woke crying around 3am so she gave her a dose of Lortab. That helped her to fall back asleep. She woke again around 7 and fussed a bit but no crying and after getting her diaper changed, she dozed back off. From 9-12 she was laying there half asleep, half awake. Quiet and still...we were afraid to touch her! Finally she was looking a little more alert so her nurse picked her up and sat with her. Not a peep. She was calm, very subdued...she almost seemed drugged (but she hadn't had anything that would make her groggy since 3am)! I came in and was looking at her and I'm not sure what it was...maybe her eyesight just wasn't cooperating and she couldn't focus, I don't know. She was doing something funny with her eyes. They were half open and looking to the side (which she does often enough, but they were more fixed). I didn't like it. Looked seizure-ish to me. Finally I got her to snap out of it and open her eyes wide. I'm still not sure what that was. Tonight she went back and forth from being slightly more alert, to looking like she could fall asleep at any moment. After laying her down, she kept jolting back awake over and over again. She does this sometimes when we're holding her...when she's first trying to doze off. She'll jolt awake, eyes wide open, arms pushed out against us. Same thing, only she was doing it in bed. She seems to have settled down now and doesn't appear to have moved in a while. Other than what the night nurse said about the crying last night (and slight fussing this morning)...it doesn't appear to have been a bad day. She's definitely out of it. She's not herself. Her hands and feet were ice cold and clammy today and her heart rate (even sleeping) was elevated and in the 140s. But she's been calm (maybe a little too calm) but she doesn't seem to be in pain. Ugh. Always worrying about my girl. Speaking of, I was reading a blog tonight Chasing Rainbows, about little Gavin Leong who passed away suddenly last week. A friend mentioned him to me today and then tonight on a completely unrelated google search I stumbled upon his blog! I went back and read some recent posts, all heartbreaking, and just so scary. Please keep his family in your prayers and pray that Reagan will fight off the bad days and be back to her happy self soon!

Thursday, April 18, 2013

Day 14

Reagan slept most of the night last night. She fell asleep on her own at 9pm (second night in a row) and then slept through til 4 or 5, when she woke up laughing! She laughed for an hour or two and then fell back to sleep. She woke happy and had another good day today. She's not 100%...but she's definitely not having a bad day either! She's still doing the crazy laughs here and there, she looks a little pale to me, and tonight her temperature regulation is a bit off. She had OT early this morning and did well with that and had speech immediately afterward. She ate another almost entire container of baby food (only a few bites left)...this time bananas and mixed berries. Then at 2pm, she had PT and was not a fan of all of the stretching, but she pushed through it. No walk or swinging outside today, as the weather was pretty nasty. It was a dreary sort of day and she seemed to be a little on the groggy side most of the day...although I'm not sure if she ever slept more than a few minutes or so. Tonight she dozed off at 9pm again, but she was back awake by 10 and giving the night nurse giggles. Hopefully she gets some sleep tonight and can wake up happy tomorrow for an unprecedented Day 15 good day!!

Wednesday, April 17, 2013

Bonus post

I don't often post twice in one day, but I felt this post should stand alone (see previous post for update on Reagan's day today).

I was talking to a long distance online friend of mine today on the subject of having a special needs child and not knowing whether or not you should have another. Do you take the risk of having another child with the same medical issues/disability just because you want another child? Tough decision. Thankfully, we didn't have to make it. Ryan was a surprise...a gift from God, if you will!! It's probably a decision we would not have made. It's like playing Russian Roulette with your child's health...if you don't know the genetics behind your child's disease (or even if you do). Scary to say the least. Obviously, Reagan has blessed us in ways a 100% healthy child never could...but does that change the fact that we want/wanted a perfect, healthy happily ever after life for her? No! I think it's just so hard for those on the outside to realize what it's like for parents of special needs kids. Most people (and this is including me before Reagan) don't want to know. They look at people like us and feel sorry for us, but tend not to go further, dig deeper. Things like this happen to "other people" not people like "us"! Untrue, so untrue. There's a blog I read, Just Another Ordinary Miracle, and Ivey's mom wrote the most amazing post about the life we live as parents of special needs/medically fragile children. I urge you to go over and read it. Ivey's mom Gwen is a beautiful writer. It will surely open your eyes. To me, this life is even more difficult for those whose first or only child is medically fragile/special needs. I can attest to this because this is our situation. For 5yrs we only had one child and although she's opened our eyes and made us much, much better people...we've also become very isolated. We have very few friends and rarely ever get out to do anything that's not with other families affected by mitochondrial disease. Maybe we've become jaded, or are just too much of a Debbie Downer for our old friends to handle (I literally lost a childhood friend because she told me it was too much for her to listen to my problems...when my child was seizing over a 1000 times a day), but we need human interaction too. I think it's the fact that people living in the "normal world" just can't relate to us any more. Their complaints and frustrations seem minuscule compared to what we deal with on a daily basis and that makes them hesitant to confide in us. To relate to us. I'm hoping that Ryan will be our link back to "normal". Expose us and Reagan to what everyone else does on a regular weekend. Soccer games, t-ball, etc... Help us to meet new people, make new friendships, and get Reagan out and about a lot more! As special needs parents you eventually establish a "new normal", but that is still so far from what typical society views as normal, and you're still left with that feeling of isolation. I don't know. Just my thoughts. Did you perhaps see the footage from the Boston Marathon of the girl in the (rather large) stroller (those of us with special needs kids recognize it as a special needs stroller) being pushed away right after the bombing?? I did. My eyes immediately were drawn to her and I wondered what her story was. Well, I saw an article today about her and she has Mitochondrial Disease!!! She's 18yrs old and her mother ran the entire race pushing her! They were just crossing the finish line (with her mother's fiancĂ© and her uncle who joined up with them at the very end) as the bomb went off! Her uncle was hit in the ear with some shrapnel but everyone else was fine. Click here to read more. 
Also...please pray for those affected by the explosion outside Waco tonight!

Day 13

Reagan slept the whole night through last night and this was a feat considering her brother was having a major meltdown from 11:45pm-1am!!! I'm hoping this is still just a result of him teething, because I'm not sure how much more of this I can take! It's exhausting! Reagan woke up around 8:30am and I guess the pjs did their job, because she's still OK! Not very smiley, but plenty of crazy laughs...she's had another pretty good day today. She had speech this morning, where she proceeded to gobble up an entire container of Apple Cinnamon Oatmeal baby food!! Well, not really gobble, the therapist basically spent the entire session feeding her, but Reagan kept eating and never showed any signs of wanting to stop! Pretty amazing if you ask me! Then this afternoon she had school and she did seemed to enjoy that as well. Tonight her temperature was a bit off but other than that she was good. She dozed off early again...right around 9pm. Hoping for a good night's rest for everyone tonight...and good day number 14 tomorrow!!



New use for pillow pets...




Tuesday, April 16, 2013

Day 12

Reagan slept all night last night. Her brother, well he woke up at 2 and screamed and cried nonstop til 3:30am! Even with me going in there and him using me as a pacifier...he's still not settling down and going to sleep. I'm not sure what his deal is. He's fine all day long (his usual whiny self, but fine) and then he's losing it at night! He's doing the same thing tonight as well. He slept from 8-11:45 and now it's 12:30 and he's still at it with the screaming! I don't know what to do with him. He's going to wake his sister up! I already gave him tylenol...I'm not sure what else to do. He's really throwing us for a loop! Reagan has been good. Still very tense in her body, hands in the mouth and hair at all times, but she's been good. She got a little crazy today (laughs that were headed toward tears), but then she had two dirty diapers, so I'm pretty sure that was the culprit. Poor girl. That tummy gives her a lot of grief. Today was day 12, so I'm hoping she'll pull off a day 13! She's wearing her lucky "Today is going to be awesome" pjs!!! No bad days, no bad days, no bad days...

Monday, April 15, 2013

Day 11

Reagan slept well last night (her brother...not so much). She's been a good girl today. Again, not very smiley this morning, but she warmed up as the day went on. Still very tense/stiff. Lots of crazy laughs this afternoon and tonight. She had OT this morning and did well for that but then she dozed off and slept through vision therapy and school. She woke up fussing (which really had me worrying), but she just needed to go potty and felt much better after that! Poor girl! Even when her body is ready to go, her brain just won't let her! She went again tonight, so hopefully she feels better now that she's got that all out of her system. Today was day 11 since the last bad day, so we're getting dangerously close to her limit. Hopefully she'll break the 12 day streak this time around! Please continue to keep her in your prayers!

Sunday, April 14, 2013

Still sweet

Reagan slept well last night (and I didn't have to give her the clonidine). She woke up this morning still sweet, but serious. She got more smiley/happy as the day went on, but not quite the same as yesterday. She was a little sensitive today and even more so tonight. She's also still very stiff...tonight she was wearing silky pajamas and I could barely keep her on my lap! I took her out on the swing again today but she's just so tense in her body, I'm not sure how much she enjoyed it. At least her got to spend some time outside away from her brother! He's such a whiner...I know she's got to get sick of him!









Saturday, April 13, 2013

Clonidine Crazy

Reagan dozed off on the sofa last night laying with her Daddy, but then woke up again an hour or so later when Daddy failed to lay her in bed. I gave her clonidine and then he laid down in bed with her where she proceeded to go crazy! The clonidine had the opposite effect on her! Instead of calming her down and putting her to sleep, it made her completely erratic, kicking and flailing all of the place. You could tell she was tired, her eyes were closed most of the time, but she just couldn't hold still. And she did NOT want to be restrained! Finally I gave her a dose of Lortab and then 30min or so later she calmed down and fell asleep. She actually slept straight through until this morning when her brother woke up at 6am and then in turn woke the entire house. I tried to get him back to sleep but he was not having it (and he's been off schedule all day because of it)! Ryan has been difficult all day, while Reagan has been completely wonderful! Totally laid back and calm, but still having lots of chorea (kicking her legs a lot). I also think her reflux is acting up because she's been hiccupy and making these weird gasping noises here and there throughout the day. Other than that, she's been great. So sweet. And snuggly. Definitely wouldn't have guessed that based on how she was last night!! I'm not sure whether I should try the clonidine tonight or not. It's weird how it can affect her so differently on any given night! She had a similar reaction to it last Tuesday night. I don't really know the mechanism of the drug, but since it's a blood pressure medication (and not some sort of neurologic drug) I wouldn't expect that sort of reaction. Hopefully she'll doze off on her own and I won't have to give it to her at all!

Friday, April 12, 2013

All the noise, noise, noise, noise!!!

Reagan slept OK last night. She woke around 5:30 and then was up for a little over an hour and fell back to sleep around 7am. She didn't sleep long though with her noisy brother up and about! She had PT this morning and did surprisingly well for that (except she still wanted her hands in her mouth nonstop)! She's been in a similar mood to yesterday. Vocalizing here and there in her "I might freak out soon" sort of voice! It kind of reminds me of the noise the baby Velociraptors made in Jurassic Park. It's almost this cute, playful sort of sound and if you didn't know better, you might think she was actually happy and encourage it. But the second you do, she'll bite your hand off! Seriously...it's a fine like we walk when she's like this...the smallest thing can set her off. The ipad...not a good idea on days like this. Stander...probably a bad idea too. And the mowing outside...she likes that least of all!! On any given day/time in our neighborhood (other than Sundays maybe), someone is getting their lawn mowed/blowed. We live in a neighborhood where most of the people are of retirement age and therefore no one...and I mean no one...mows their own lawn! Since we moved into this house our lawn mower has been out of the garage maybe once ever! It's just easier and not that expensive. But...it's LOUD!  They use high powered equipment that makes SO much noise and Reagan is definitely not a fan...especially on days where she's already on edge! And Ryan, well, it's hard for him to take naps with all the noise as well. And never fail, both of our kids will decide to sleep in on Saturday morning, when our next door neighbor's yard men show up at 8am on the dot! Weed eating just outside Reagan's bedroom window! Ugh! Can you say annoying?!?! So this afternoon, all was quiet outside so we decided to let Reagan swing outside for a while (while brother napped). Of course someone from across the way had to fire up their lawn mower, but it was so far away it didn't seem to bother her. After about 45min on the swing, her nurse took her for a walk (Ryan was still sleeping so we stayed behind). Ryan woke up about 20min later and we stepped outside to watch for sister. Well, wouldn't you know it, our neighbor's yard men pulled up and fired up their engines only moments before Reagan and her nurse walked up! I yelled at the guy but he couldn't hear me, so then I started signaling for him to cut his engine...he turned around and walked the other way! Finally, I had to run up to him with Ryan in my arms (I was this close to punching him in the face) and screamed at him to TURN IT OFF!!! Finally he complied and we were able to get Reagan back into our house without a major meltdown! She really has been a good girl today! Ryan had several screaming tantrums and she tolerated them well. I'm still not feeling great and now Mike and my mom are both coming down with similar symptoms, so I'm hoping for a quiet and calm weekend for everyone's sake!

Thursday, April 11, 2013

Out of control chorea

Reagan had a bit of a rough night last night. She fell asleep on her own without clonidine but woke back up around midnight and was thrashing around. The night nurse picked her up and gave her the clonidine. She got worse. She was not happy and she couldn't stay still for even a second! At this point Daddy got up because he couldn't sleep and took her from the nurse and laid down in bed with her. She fell back to sleep for a while, but eventually woke back up and the nurse picked her up again. This morning I found her asleep on the floor in her therapy room. She woke up around 8:30am and she was fine. Still moving a lot and constantly crunching in half with her hands up in her hair. She had OT at 9 and Speech at 10 and did fine for both. Then this afternoon she had PT (her therapist said she's really tight in her legs/hamstrings) and then stood in her stander afterward. She fell asleep after about 30min in the stander, so we took her out and just left her AFOs on for the full hour. She slept for another 30min and woke up just in time to take her AFOs off! (Her feet get SO red from wearing AFOs...but thankfully the redness goes away fairly quickly.) This afternoon she started to get a little more vocal (in a bad way) and we suspected tummy issues. Finally she did have a dirty diaper, although we're still thinking there's more where that came from. Tonight she continues to be on edge...smiling but making noises that don't sound very happy (she gets even worse when I talk to her or try to hold her). Lots of chorea. I'm not sure where this is headed, but I sure hope we can avoid the bad days at least for a while longer!! I'm still not feeling well. I don't know if it's allergies or what. I've got a sore throat, runny/stuffy nose, sneezing, a dry cough...and Ryan has it too! I'm hoping it's just allergies and that Reagan is spared!

Wednesday, April 10, 2013

Sleepy day

Reagan had a sleepy day today...it was a dreary, overcast/rainy day...so good day for it! She slept all night last night and then kept sleeping this morning. She woke up for a brief period (maybe 45min or so around 10am), and then she was back asleep for the rest of the day! She was moving around a bit sometime after 6pm, so I went in and saw that she had a wet diaper. As I turned her over to change her, I saw that her tube had popped out and she was leaking yellow intestinal fluid all over the place! Who knows how long it had been like that, with her leaking and her pump pumping formula out onto the floor!?!? Ugh. So I had to strip her down and change all of the clothes and diaper and in the process she did finally wake up! She was happy, but tense (she was "crunching" a lot with hands tangled up in her hair). She stayed awake for a couple of hours and then finally dozed back off in my arms (I think she likes to be held...it helps to calm her nonstop movement). I'm hoping she wakes up and has a normal awake/good day tomorrow!

Tuesday, April 9, 2013

Super precious

Reagan slept last night but she was restless. She tossed and turned but her eyes were closed the entire time. The night nurse finally picked her up around 4am and held her until 7...she seemed to sleep better when her movement was restricted. She woke with a smile though and she's been smiling ever since. She's been super precious today. Just melt your heart precious. She is a little off though...her temperature regulation has been off and she's having a lot of chorea (unable to sit still for a second). Ahhh, but those smiles, so wonderful! She had lots of therapy today, OT, speech, & PT, and she did great for it all. She ate during both OT and speech and she even did an hour in her stander after PT. She's been such a good girl. Even when her brother was throwing a temper tantrum tonight and screaming bloody murder, she just sat there (with her hands in her hair) smiling! Brother has been quite the challenge today. He woke up what seemed like a thousand times last night and then has been quite the stinker today as well. It could be the fact that those two upper lateral incisors still have not broken through yet (speaking of, Daddy wiggled Reagan's upper left lateral incisor until it came out last night)...or maybe he's just a brat? I don't know. He's trying to kill me. I've had a sore throat and runny nose all day today...I hope it's just allergies and I'm not getting sick. No sleep sure doesn't help! Hoping everyone gets some good sleep tonight!

Looks innocent enough...he's trouble!

Monday, April 8, 2013

Late Easter pics

Reagan slept well again last night. She woke up around 6am and was moving around and making some sounds, 30min later Daddy finally went in there to lay down with her and POW she was back to sleep! (Daddy is the best at getting her back to sleep!) She even slept in a little this morning! She woke up sweet but a little sensitive...for some reason the sound of Mommy's voice seemed to put her on edge. She had an early session of OT at 9am and did great with that. Then she took it easy for a bit (and Mommy stayed away so as not to upset her) and she had vision therapy at 1pm (with OT). She did great for that too. We started something called a lotion routine. It's basically just a routine (it could be anything...we're using lotion), to get her involved and expecting what will happen next. I'm curious to see how it goes over the next few weeks! Then at 3pm, she had "school" and her vision teacher came back and sat in the entire hour giving her teacher suggestions on how to hold her visual attention. She had a really good session and was visually attentive the entire time! I'm definitely going to miss our vision teacher when we move! She's so enthusiastic and always has great ideas on things she wants to try with Reagan. Plus she lives in our neighborhood, so she is very flexible and can work around Reagan's crazy schedule! So many great therapists, teachers, doctors that we're going to miss. This afternoon we had a visit from the Easter bunny! Since Grandma didn't come last weekend, we had to do our bunny pics a week late! I think we got some cute ones...










Sunday, April 7, 2013

Such a sweetie

Reagan slept well last night and woke sweet and smiley again this morning! She's been a darling girl today. So easy going and happy. Love days like this for her. We took a little stroll and visited with some of our neighbors and then watched Grandma trim hedges in our yard! Daddy brought over a little garter snake for Reagan to touch! She wasn't scared...such a big girl!! She really is starting to look so grown up to me! I can imagine even more so if she could walk around and we saw her at her actual standing height. She's such a good girl. Brother could take some notes from her! He has been quite the holy terror! So demanding...wants Grandma to carry him around nonstop! I'm hoping it's just the teeth coming in and he's going to ease up soon when they actually come out?!?! He hasn't been sleeping well lately either, so he's really been giving me a hard time lately!!

Saturday, April 6, 2013

Happy girl

Reagan slept well last night and woke up this morning feeling more like herself.  She was a little wide eyed when she first woke up, but she's been smiling, giggling, and just all around more relaxed today. So nice to get a glimpse of our happy girl again! I can't tell you how thankful we are for how well she's been doing lately! Definitely an answer to prayers! Ryan has been particularly whiny again today...I think those upper teeth are giving him a hard time! He's spitting like crazy and keeps trying to bite everything! He is a walker though...he's walking all over the place. He's still doing the unsteady monster walk, but he's definitely walking! Tonight Grandma surprised us and came in early (she usually comes Sunday morning)! Ryan immediately walked over to her and then didn't want her to put him down the rest of the night! Reagan was loving Grandma time as well...she was laughing and dozing off on Grandma's lap. Hoping everyone gets a good night's sleep tonight!!

Friday, April 5, 2013

Serious but OK

Reagan slept well last night (and that's even without clonidine)!! She slept in this morning...just long enough to miss therapy. She woke up still a tense and serious, but no crying. She's been a little groggy today and took several long naps. She was still sensitive to noises, but despite several nasty looks, she never really fussed about anything today. Tonight she started yawning and dozed off on Daddy and she's been sleeping ever since! She's a little restless (she keeps moving around but her eyes are still closed), but hopefully she'll sleep through the night! Hopefully we get our happy girl back this weekend! Grandma is coming in on Sunday, so I bet that will get some smiles!!

Thursday, April 4, 2013

Hate to be right

Reagan slept the whole night through last night but when she woke this morning, she was NOT happy! I can't say that I'm surprised, we've seen this coming for days now, but we always hope she might skip over these bad days. She did make it a full 12 days (12 good days between her last two bad days)...not too shabby. The pattern has been 11, 12, & 12. And as far as bad days go...it hasn't been too bad. She woke up upset, but a dose of clonidine calmed her down and she fell back to sleep and slept the rest of the morning. She woke back up this afternoon and was crying (but not a screaming cry like she's in horrible pain, more of a fussy cry like she's uncomfortable). A dose of Lortab took the edge off a little. She slept a little more but then was awake for a period where she didn't even cry. She was still very tense and we were worried about her biting herself, but we managed to make it through the day without even using her arm restraints (but she did grind her teeth a few times where it sounded like she had bitten something off)!  I wonder if maybe the bowel movements she had earlier in the week have prevented her from being so miserable this go round...no idea. Tonight she was awake for a bit and even had a few little laughs, before falling to sleep on her own around 9pm. Hopefully she's able to get some rest tonight and wakes up feeling better tomorrow.

Wednesday, April 3, 2013

Quiet but tense

Reagan slept some last night. She's definitely been a little more restless the last few days and that's showing up in her sleep pattern as well. Today the chorea has been a little less, but the cold clammy hands and feet have been brutal! She appears more calm and relaxed (despite being very sensitive to noises), but she's still very tense and stiff in her body. For example, I gave her a bath tonight and she couldn't relax at all...she was so tense laying on her back and had her knees pulled in so tight to her body, she was almost kneeing herself in the face!! She's been a good girl today though, despite the obvious war her body is waging against her. Not a lot of smiles, but some subtle ones here and there. She had private speech, school speech, & school today and did well for them all. She's still a little spitty (something we haven't noticed in quite a while)...it's not pouring out, but it's enough where we are having to wipe her mouth every now and then. Tonight she finally had a dirty diaper on her own (the last couple she's needed my help), so I'm hoping maybe she'll feel a little better. No idea what tomorrow holds (we're going to keep our fingers crossed for good days), but I'm hoping she at least gets some rest tonight!

Tuesday, April 2, 2013

Still smiling

Reagan had another good day today. Sure, things are a bit off for my girl. She's moving a lot, feet are beyond cold and clammy, and she was a little sensitive off and on today...but she's still smiling, so that's a good day in my book! She had a make up session of vision therapy this morning and did really well with that and then this afternoon she had PT and even did another hour in the stander afterward! She never made a peep! I'm hoping that she'll continue to hang on and fight those bad days off! Oh to have another month long good day streak! I'll leave you with a video of brother walking!
video

Monday, April 1, 2013

Bad days stay away!

Reagan slept well again last night. She's been very active today. Lots of kicking, lots of crunching, lots of hair pulling and fingers in the mouth! This girl, she may not walk, but she sure gets her exercise! She had another good day today. I looked back over the blog and her last bad day was on March 23rd, the one before that was March 11th, and the one before that was February 28th. That's 11-12 days between her bad days (and each time it was only one bad day). So...that being said, she's been showing some signs the last couple days. An increase in chorea, biting a little more and a little harder on her fingers and her necklace, increased heart rate, clammy hands and feet (which have been OK today), and tonight I smelled a hint of bad day smell. We'll see. I'd love for her to prove me wrong. No doctors appts this week, so just trying to get back into the groove with therapy and school...hopefully she goes along with the plan! Brother bit the dust today beside her stander and has a nice gash in his forehead to show for it! This boy is trouble! I'm calling him Frankenbaby...