Wednesday, December 31, 2014

Easy going NYE

Reagan had a good nights sleep last night and woke up this morning sweet and content. She's definitely given us more smiles today, but still not super smiley. Laughs when encouraged and she continues to be very calm and still (and loosey goosey). Not sure what that means, if anything, but we're enjoying while we can! She had speech and PT today and then just took it easy and tried to stay warm the rest of the day! It's been super chilly here, so we're all just hanging around inside trying to stay toasty. Haven't gotten her out on her bike yet, but I'm sure we'll have plenty of time to do that soon. She's still a little spitty, biting her lower lip, and grinding her teeth off an on, but no other signs of stress. Just a low key night at home tonight for New Year's Eve. Not sure if we'll ever have the opportunity to get out for a NYE again, but we're not big on going out anyway! At least we don't have to worry about braving the streets! Good night and Happy New Year to everyone! Hoping this year is Reagan's best yet!

Tuesday, December 30, 2014


Reagan slept well last night and woke up very calm and sweet again this morning. She's been very laid back all day today. Not a lot of kicking around and very still arms. She had an appt with Neurology (just a routine follow up) and we discussed how she's been doing, set up a yearly 24hr EEG, and got refills on her prescriptions. We took her weight which seems to be hovering right around 47lbs (46.8), which is good considering her decrease in calories from switching her formula. Reagan was a complete doll...she's always relaxed for her neuro appts! I don't think he's ever seen her stressed or upset once! We really like her neurologist, he seems to genuinely care about Reagan and he's got a great easy going personality, he's a rarity in the field of neurology! Reagan had PT before her appt and then OT when she got home, so it was a busy morning/afternoon! The rest of the day she just took it easy. She was a little spitty/chokey at times (could be because of her decreased tone) and had multiple occurrences of burps and hiccups (she was doing the same thing yesterday)! She was so precious though. Super calm and laid back. Love to see her able to just be still!

Monday, December 29, 2014


Today has been another laid back sort of day. Reagan slept well in her bed last night and woke up this morning very calm and content. So calm that she's had multiple dirty diapers all on her own! She had PT and OT today and did well with both, although she was a bit loosy goosey at times. We were able to get a few laughs out of her when prompted (when we made a silly noise or something)...she humors us. Tonight she was a little spitty/chokey at times, but overall good. Hoping for some good days to round out the week!

Sunday, December 28, 2014

Serious but better

Reagan slept all night last night and woke up this morning serious but not crying! (Woo hoo!) She's been very serious all day, but content (we'll take it). She took a nice relaxing bath this morning and then has just been chilling all day. This afternoon she sounds a bit congested, but I really think it's just from all of the crying the two days before. She's a little snorty, but it seems to happen when she's got her mouth closed and she's forcing herself to breathe out of her nose! So happy she's finally on the upswing! These last two days were brutal! Here's to good days!

Saturday, December 27, 2014


So Reagan was up and down a lot last night. Very miserable...definitely not better. Today, in general, has been worse than yesterday. The medication isn't working as well as it did yesterday and she's just all around more miserable. We've had to keep both arms in restraints most of the day today to prevent her from biting herself (and even then, she still took a nip out of her thumb)! She definitely seems to be in pain, but nothing seems to be helping. It's been frustrating to have to watch her suffer like this (once again). Tonight she kept trying to fall asleep but she'd pop back awake just as she was dozing off...over and over again. Poor thing. FINALLY she dozed off after a dose of Ibuprofen and I'm hoping she can sleep it off tonight. Praying my girl can get some rest tonight and wake up much improved tomorrow!

Friday, December 26, 2014

Rotten day after

It's been a bad one for my girl. We were so happy to have her smiley and wonderful for Christmas, but this morning she woke up serious and before long took a turn for the worse. Thankfully, she was very responsive to medication most of the day, so we'd give her something and she'd doze off almost immediately. Didn't work as well tonight as she had several longer crying spells...hoping this is the worst of it and tomorrow is a better day!

Thursday, December 25, 2014

Happy Christmas

Reagan had a great day today! She slept well and woke up smiling...what more could we ask for!?!? Not only did she wake happy, she was a sweet smiley girl the entire day! We got a late start with gift opening because my sister didn't get here til 10:30am, but there were so many presents, it took us until 3pm to finish! Ryan was very whiney/moany (I still wonder if maybe he is coming down with something), but he was also on total toy overload! We definitely should have spread this out over several days, maybe two weeks or so! There were just too many presents for him to take in! Reagan got a ton of gifts as well, and so many clothes, we're going to have to clear out closet space to make room for them! Reagan continued smiling all night, but she has had a few signs of being a little "off" (sweating her back wet multiple times was just one of them). Hoping my girl can hang on and continue with good days! It's been two weeks since her last real bad day.

Wednesday, December 24, 2014

Smiley Christmas eve

Reagan had a good day today. She's been super sweet and cute all day. No therapies, just chillin on Christmas Eve! Definitely ready for Santa to come (we watched Elf for the thousandth time tonight). A little easily excitable at times, but otherwise good. Hands and feet are cold and clammy (and back a little sweaty), but still so smiley! It's been a late one though...this girl didn't go down for bed til 12:30am! Someone wanted to catch a glimpse of Santa!

Tuesday, December 23, 2014

Sweet girl

Reagan finally slept last night! And in her bed! She was a sweet girl today. Still a little tense in her body, sensitive to music on tv (even the slightest bit), and spitty and making some gaggy faces this morning...but still smiling from ear to ear. Not really sure what to expect for Christmas! She hasn't really followed any sort of pattern here in the last couple weeks! She only had one therapy today, OT, but she did well with that. This afternoon we got a very special delivery from Santa! Reagan's new Freedom Concepts Bike! It comes completely assembled so they have to deliver it in this massive box/crate! Can't wait to get her on it! Tonight we were hoping to just relax, watch Christmas movies, and wrap presents but that was not to be! My mom's dog escaped from the house and then we spent what seemed like forever driving around through the neighborhood screaming her name! We had 6 people driving up and down the streets trying to track her down! She's an Afghan Hound so spooked and then took off running like a greyhound! My mom and neighbor eventually found her in a field one neighborhood over (on the other side of a very busy street)! She had worn holes in the pads of her feet from running so fast! She seems to be OK other than bloody feet and being completely exhausted! More excitement than I needed tonight. Reagan has been good tonight, hoping she'll hold out for a good Christmas! 

Monday, December 22, 2014

Mellowing out

Reagan was up a lot last night. She slept for the first bit, but then from 4am and on, she kept fussing and I'd have to run in and check on her over and over again! She was still pretty tense this morning, but after PT (with lots of stretching), she really seemed to mellow out a bit. And during OT, she even spent some time in her AFO's/stander! This afternoon she was good, but making a lot of gaggy sort of faces (very spitty, jamming her fingers down her own throat, etc...). Tonight she's been a little sensitive to the tv, but good. We were finally able to get her asleep and into her own bed! Hoping she sleeps well tonight!

Sunday, December 21, 2014

Still very tense

Reagan slept in her chair last night and woke up in a very similar mood to yesterday. Very tense, lots of vocalizations, lots of crunching! Lots of tummy rumbling and gas! But still giving us some smiles and big beautiful eyes! Unfortunately, lots of moaning too. She was definitely happy to see Grandma, but we all had to be careful not to stress her out because even too much talking was causing her to escalate. She was a little more spitty and sticking her tongue out and swallowing a lot, but not nauseous or anything. We had to restrain her left hand most of the day because she wanted to constantly cram it down her throat! We've had to use oxycodone off and on today just to try to settle her down. Sometimes it would help her to sleep, sometimes not. I'm really not sure what to think of these days. Are they mild bad days or are they tense days leading into bad days?? No idea but I'm hoping she's almost done with them! Really hoping for some 100% good days for Christmas eve and Christmas day!

Saturday, December 20, 2014

Tummy troubles?

Reagan had another sleepy sort of day. She was smiling when she woke up this morning, but still very crunchy and tense. Grinding her teeth and biting her lower lip a lot. She slept off and on today, but not nearly as much as yesterday. Very vocal in an "on edge" sort of way. But nevertheless, she was still in good spirits and never let anything send her over the deep edge! Grandma is coming in tomorrow, so I sure hope she hangs on and continues to have good days. Definitely seems to be having some tummy issues today! Lots of rumblings going on in the tummy, usually followed by stressed vocalizations. Poor girl.

Friday, December 19, 2014

Sweet sleepy and coughy

Reagan slept in her bed last night and woke up this morning coughy but smiley (I realllly hope she's not getting sick). She's definitely holding more tension in her body. Very crunchy, hands up in her hair a lot. A lot more kicky. But sleepy! She actually slept off and on most of the day! She missed speech this morning because she was snoozing (which was OK because her therapist needed to work on her eyegaze device anyway), but thankfully that was her only therapy scheduled for today! When she was awake, she was still super smiley and sweet, but definitely more tense than she's been in days. That makes me a little nervous, that and the fact that she's been a full week without any bad days (which is super awesome)! Her last one was last Friday...and it was a BAD one. Hopefully she can continue this good streak! I certainly like the idea of her stringing together more good days again. Not sure what any of this means for Christmas. Hoping she can pull out some good days next week so everyone can enjoy the preciousness that we've been experiencing! 

Thursday, December 18, 2014

Super smiley

I don't think Reagan slept much last night...but this morning instead of finding a tense crying girl, I found a super smiley sweet girl! Talk about a nice surprise!! She's been super smiley and darling today. The last several days, while calm, we haven't seen many smiles. Apparently she was saving them up, because she's been all smiles all day! No therapies this morning, but OT and school this afternoon. She did well with both and even spent a while in her stander during OT. I have noticed today (and maybe last night) her hands and feet are cold and her back is sweating a lot (and maybe even a slight "bad day smell"). Tonight she was being beyond precious and sweet! Looking like Cindy Lou Who! So darling. Hoping she gets some sleep tonight.

Wednesday, December 17, 2014

Calm day, not so calm tonight

Reagan slept well and woke up super calm again today! Very still, at times looking sleepy, but she never slept. She had PT and Speech today. PT went really well and while her speech therapist was here, the Tobii rep came out to help set up her new device. A couple of the mounts (the floor mount) is missing and the mount that did come (the wheelchair mount) is completely unassembled and they don't help with that at all (you'd think buying a $15,000 computer from them, they'd assemble the mount right)! We were also having some issues getting all of the stuff her therapist has already set up for her transferred to the new computer, but turns out it was just a bad jump drive! So everything is transferred and we're just using the old floor mount until they figure out what happened to ours! Tonight Reagan was really giving us some issues in the sleep department. After being chill all day, tonight when it was time for bed she was getting agitated. Mike laid down with her but we had to just move her to her chair. It's not looking like a sleeping sort of night tonight. Not sure where she's headed with this...

Tuesday, December 16, 2014

Still calm

Reagan slept well last night and woke up calm and content again today. Still very serious, but OK. She was a little tense at first, but seemed to relax more as the day went on. She had OT and school (teacher, vision teacher, and school speech therapist). She did surprisingly well with both! This afternoon, her eye gaze device was delivered! So happy to finally have it here...this has been about a year in the making! Tonight Reagan was so precious, I just had to take some pictures of her in front of the Christmas tree! Such a sweet girl!

Monday, December 15, 2014

Very calm

Reagan slept well last night. She was still asleep when I went for my walk at 5:50am! About 15min into my walk, I get a call from the nursing agency (never a good thing)! Our nurse is sick and running a fever! Ugh. One, that means we we'll be on our own today but two, this is the nurse that was here on Saturday, so I'm praying Reagan didn't pick anything up from her! Thankfully my girl woke up very calm and collected and she's been super laid back all day long. Still a looking a little gaggy (tongue out, spitty, and smacking her lips a lot), gunky in her throat, but no actual retching or throw ups. She had speech this morning and was a little serious but OK. Afterward she was SO close to falling asleep but then it was time for PT! She didn't get a lot done, but she took advantage of her low tone and did some good stretching on her feet and then put her AFOs on! Then this afternoon she had OT and did really well for that. Her tone is low but her head control is still good, so she was able to get her on the floor and do some mat work with her! She's been quite still and zoned out at times, so I'm really wondering what we might have in store tomorrow. Please continue to keep her in your prayers!!

Sunday, December 14, 2014

Tummy trouble

I was still had to go in to give Reagan medicines after we put her in bed. She was resting peacefully, but she'd occasionally stretch and make some strange faces (kinda gaggy, mouth smacking sort of faces). As far as I know, she slept well last night. But when we went in to check on her this morning, she had rolled over onto her tummy and I could smell formula leaking. She was still asleep, but I turned her over (waking her up), and discovered that formula had leaked all over her bed because of her pushing her button in an awkward position. We picked her up and moved her in to her therapy room, but just the act of picking her up encouraged her to poo! So then we ended up with a huge leaky poo diaper! We decided to just do a bath right then and there! So my girl got all nice and cleaned up first thing this morning and then looked sleepy the rest of the morning but never fell alseep. Then this afternoon, her nurse heard a rumble and thought another poo might be imminent, but then all of a sudden she had a throw up! Ugh. Not happy about that. I don't remember the last time she threw up! She did finally fall asleep afterwards and slept for a little stretch this afternoon. She was a little burpy this afternoon, but never got sick again. Tonight she was very calm and laid back, but her tummy was making some serious noise! I kept hearing it rumble over and over again! I helped her to go potty again (her third of the day), let's just say she's a clencher! She must've felt better afterward though because she dozed off shortly thereafter! Hoping she can still get a good night's sleep tonight with that over active tummy! 

Saturday, December 13, 2014

Way better

Reagan slept the whole night through and woke up this morning WAY better. Still very tense, but other than a couple of whines, she was pretty calm. She actually mellowed out as the day went on. Thank you God for a quick recovery! Yesterday was brutal, she really deserved a break today! She was so calm that we were even able to bring her out for our culdesac Christmas party! Loud boys and basketball bouncing didn't even bother her! She stayed out until it started getting a little too cool for her and then we brought her back inside. Rudolph the red nosed reindeer and Frosty were on tv, so we got another dose of Christmas before bedtime. Reagan dozed off in her chair around 9pm (a very early bed time for her) and Mike moved her up to her bed. Hoping she can get a good night's sleep tonight and wake up feeling even better tomorrow!

Friday, December 12, 2014


Reagan slept well last night and then woke up this morning CRYING!! We really weren't expecting this, I think we had been lulled into a false sense of security, thinking maybe just maybe she would continue having good days. Nope, didn't happen. She was MISERABLE! So completely hysterical that her pulse was up to 200 and her sats were falling to the 70s-80s. Her nurse was concerned because she had never seen her this upset (this used to be her norm). It took a while for the medicine to take effect, but eventually we were able to get her back to sleep. As the day went on, she seemed a little more responsive to the meds and a little less hysterical when she'd wake up. She fell asleep around 7pm and stayed asleep the rest of the night. We did not even attempt to move her or change her, we just left her in her chair. Praying she wakes up much improved in the morning.

Thursday, December 11, 2014

Really great!

Yeah! Reagan stayed in bed all night! Did she sleep? Maybe, a little? But at least she was out of her chair! I did have to go in and move her back under the covers at one point, because she was laying horizontally at the top of her bed! But when I went in to get her this morning, I had a sweet, smiley girl waiting for me! Soooooooo happy to still see smiles! She's been REALLY great today. Very laid back and sweet. She had private OT and then vision & OT from the school this afternoon and she did really well with both. Really well. Her private OT was impressed with how awesome she was today and then she was doing so well with vision, her vision teacher stayed double her alloted time! It was an all around wonderful day for my girl. So thankful for days like these! SO thankful. Hoping she finally gets a good night's sleep tonight (she dozed off on her own while laying beside me on the floor)! Prayers for continued good days are appreciated!

Some action shots! 

Sitting in her "little room" enjoying the lights!

Wednesday, December 10, 2014

Busy day, smiley girl

Not much sleep last night for my girl. Thankfully, she let us sleep (for the most part, I still got up a few times to check on her). Today has been a better day for her! She's still vocal, but not in the "I'm about to freak out" sort of way. Definitely less sensitive overall, but we were also very careful around her. She did really well and tolerated FOUR therapies today! She started off a little sensitive and just got more laid back as the day went on. During speech she made 21 choices! A new personal best! Then she had PT and did some tummy time among other things. Then in the afternoon she had OT and even spent some time in her stander. And finished up the day with an hour of school! Busy, busy day! She's been a trooper! Tonight I stayed upstairs with her because Mike is coming down with a cold or something, so the last thing we need is a sick girl! She's still really gnawing at that hand and we're seeing the beginning of a blister on her thumb! She's so tricky though, I hide her hand away from her and the next thing I know, she's sneaked it back out! Tonight she's still pretty vocal and not falling asleep! I gave her some clonidine and I'm hoping I can get her to sleep in her bed! She needs some time out of this chair!

Tuesday, December 9, 2014

Very sensitive

Reagan finally had a good night's sleep last night! She woke up this morning smiley, but still very vocal (in not a good way). It's been a very sensitive sort of day. She had PT this morning and OT shortly thereafter because we weren't sure how long she was going to hold out. We really thought she was headed downhill fast! PT didn't go so well, she got very sensitive and we had to cut it short a bit. OT was a little better, but still very sensitive. We canceled school this afternoon, because we thought there was no way she would tolerate it! She made it through the rest of the day/night OK, we just had to be a little careful with her. Tonight we tried her in her bed, but she just got super vocal and just wasn't tolerating it. We moved her to her chair and are hoping maybe she'll doze off!

Monday, December 8, 2014

Very vocal

Reagan was up most of the night last night. Around 3am I moved her to her chair because she was kicking around so much in her bed. She was VERY vocal, at times sounding like she might lose it, but she never did. She was in a good mood most of the day. She had speech and PT this morning and did really well with both (although she's still very crunchy). Afterward she fell asleep for a bit, just long enough to miss OT! This afternoon she was awake and spunky. Tonight she was a lot more tense. Very sensitive to noises (tv and her brother). Making lots of moaning vocalizations and grinding her teeth a lot. I gave her Lortab around 7 and that seemed to calm her down a bit. She dozed off for a little while but woke back up shortly thereafter. She continued to be vocal and very excitable the rest of the night. We were nervous about giving her clonidine, but she wasn't really winding down enough to fall asleep, so I gave it to her. I picked her up and held her and I could tell she was beginning to get sleepy, but her body was still really fighting it! Finally Mike took her upstairs and laid down with her and she fell asleep! Praying she's able to get some rest tonight and hoping she doesn't wake up upset tomorrow!

Sunday, December 7, 2014

Santa all done

Reagan was a little restless last night, but thankfully she was still a smiley happy girl. A little more sensitive today, but still good. Very crunchy, hands in the hair and mouth A LOT. Not necessarily optimal for pictures, but it definitely could have been worse. When we got there we checked in and then sat down at some tables they had set up (the kids could color and they had some snacks as well). Mike ran home to grab Reagan's sweater and he was almost there by the time they called us. We let someone go in front of us and then we were ready. Reagan was great, but Ryan, not so much! He did so well last year with Santa, I had higher expectations. He just kept saying "All done!" Reagan kept smiling through it all and we got some pretty cute pics! She was a good girl the rest of the day but tonight she was giving us a little trouble going down. Hoping she sleeps tonight. I've injured my knee and I'm having a lot of pain. Hoping somehow that a little rest will cure all and I won't have to miss too much of my training.  I'm signed up for a 10k in Jan (right beside our house) and I'm going to be heartbroken if I don't get to run it! 

Waiting to post the picture with both of them until I actually order and send out our Christmas cards! 

Saturday, December 6, 2014

The night before Santa

Reagan had a good day today. She's been sweet and smiley. A little sleepy. She slept off and on. A few little quirks...super cold hands and feet. And spitty...especially when I tried holding her. She got a little vocal tonight and her tummy seemed to be bothering her, thankfully she took care of that on her own and had a big poo diaper (yes, we get excited about poo around here)! She settled down afterward, so I think that was definitely the problem. I'm hoping she sleeps well tonight and wakes up happy and ready to go see Santa tomorrow! Wish us luck!

Friday, December 5, 2014


Reagan was doing reasonably well last night until we tried to put her to sleep! She was tired but not falling alseep, so Mike laid down with her. She wasn't getting any closer to sleep, so I gave her clonidine. That helped her to get more sleepy, but also more agitated! We had to move her back to her chair and she seemed to calm down, but was crying by the time I crawled back into bed. It was like that all night long. Lots of bursts of crying, me up and down all night, and not a lot of sleep. Reagan slept more this morning and when she woke up around 7:30am, she was giving me some smiles! Still very sensitive, but super sweet and calm, and those smiles just make me melt! She's been a sweetie today! Still very calm and cuddly. Definitely not what we were expecting and now we're really not sure WHAT to expect! Hopefully she just continues to improve over the next couple days and she is able to make her date with Santa Sunday morning! Only one therapy today and she did well with that! She's been super it when she surprises us with better than expected days!! 

Thursday, December 4, 2014

Mild bad day and great news

Well, it's been a rough one. It certainly could have been a lot worse, but Reagan has not been feeling well and crying off and on all day! The "calm before the storm" rule does not lie. The only strange thing, she's continued to be very relaxed in her body and still today, just with bursts of what appears to be severe stomach pain. She's very sad and teary eyed, but awake and quiet for the most part, and then all of a sudden it will hit her and she'll just YELL out in agony! We've been able to settle her down every time (which is very uncharacteristic for a bad day), but you can tell, she's miserable. I drove down to Dell today to get the hard copy of her Lortab prescription so we could have it filled. She hasn't required round the clock pain meds, but we certainly need to have it on hand! So it appears she holding strong to this 5 day, 7 day pattern. Today is 5 days since her last bad streak (which started on Sat). You would think with her cycles being so predictable, like clockwork, that they'd be able to figure out what this is!?!? I know everyone wants to just put it off to unspecified mito pain, but there's got to be something going on internally that causes her to have this pain on such a regular basis. Why can't anyone figure this out?!?! So frustrating. And the worst part is not knowing what kind of pain it is! Where is it hurting? If we knew exactly what was hurting, maybe we could better help her manage the pain! Ugh. That's why getting her to use the eye gaze is so HUGE! She could actually tell us what was hurting her! That would be amazing! Which brings me to some super awesome news we got today! It's been almost a year that we've been trying to get the Tobii eyegaze device for Reagan. We had a loaner, they took it back, they dropped the ball in the paperwork process and brought us another loaner which we've had ever since (and we think they've forgotten about because they would have wanted it back sooner). Anyway, this past week I've been following up with Medicaid about it as well as the people at Tobii...and today is was finally approved! So Reagan will be getting her very own eyegaze device! This is great news, especially since they already incorporated it into her IEP at school and her therapists have been using it a lot as well! Such a relief! And such hope...that one day she will be able to communicate her needs to us!

Wednesday, December 3, 2014

Too subdued?

Reagan slept well last night but it was a weird sort of sleep. A couple of times I went in there and she was completely still but opening and closing her eyes off and on. Not sure what that was about. Both kids were still asleep this morning when the nurse got here...that rarely, if ever, happens! She woke up sweet though and has been very calm and still all day. It's funny because even with her being so relaxed, her head control is still really good, and her eye contact and visual focus has been great! When you lay her down though, she turns into a turtle! Crunching at the waist with her legs pulled in to her stomach! Crazy girl! She's been more on the serious side today. Not smiley at all (and occasional laugh) but very subdued. Maybe a little too subdued. The only time I ever see her sitting with her hands palm up and by her side like that are on the "calm before the storm" days. I'm a little nervous as to what that means for tomorrow, but I'm hoping she'll be OK! Prayers that she holds out at least one more day as we have our Bible study Christmas party tomorrow night and I really don't want to leave her if she's not feeling well.
Not sure what this tongue action is about!?!? She didn't do it all day and then she started up with it after her bath and tonight! 

Tuesday, December 2, 2014

Darling girl

Reagan slept well again last night and woke up a sweet girl this morning. She's had a busy day of therapy. PT, followed by OT, and then school/vision (and even the speech therapist from school joined in)! Busy, busy! She's been a trooper though. Lots of yawns, but never fell asleep! She had a couple dirty diapers on her own today (after having to have a little help yesterday)! Always good to see things moving again after days of nonstop tension! She's been a darling girl though. So happy to see her feeling better again. Hoping it lasts! We've got an appt with Santa this Sunday and I'd really like for her to be able to go! It's called "Caring Santa". They open up the mall and keep the music down, lights down, and let special needs kids come and see Santa in a more subdued environment. You make an appt and it books up fast! Last year we didn't hear about it until it was too late. This year I signed up in time, but you just never know how she's going to be feeling on any given day! We'll see! Tonight she dozed off in my arms and was OUT! Like out, out! My arm was completely and totally asleep, I couldn't use it at all! Hoping that means she's going to have a great night's sleep tonight!

Monday, December 1, 2014

Oh Christmas trees

Reagan slept like a rock last night! She woke up this morning, completely soaked in pee, calm but serious. She loosened up as the day went on. She had back to back speech/OT this morning and did well with both. She was pretty chill all day. A couple nights ago I decorated her little pink Christmas tree and this afternoon Grandma put up a new even larger white Christmas tree in her therapy room and she seemed to enjoy looking at it. She's been a good girl tonight, just going with the flow. A little more animated tonight, making a few noises here and there, but nothing seems to bother her (even her super whiney brother)! Hoping for a nice long stretch of good days this week! Thank you for keeping our girl in your prayers!

Sunday, November 30, 2014

Too tense to go

Reagan slept last night (in her chair) but woke up crying again around 5am. Thankfully I had one more dose of Lortab left and I gave that to her and it seemed to help settle her down and she fell back to sleep. When she woke back up, she was tense, but not crying any more. She was very serious/tense all morning/afternoon. Since she wasn't crying anymore, we were able to take her arm restraints off and give her her hands back! Unfortunately, she never cheered up enough where we felt comfortable with the idea of taking her to the Reindeer Run (benefiting the All Abilities Park we like to go to). Today was Grandma's birthday, so what do I do, I signed her up to run a 5k with me! It started at 5:30pm and had us running through the same park where they had the Mito Energy for Life walk, but now they have the streets all decorated with Christmas light displays. I thought it would be a neat run for Reagan & Ryan and that they would enjoy the lights...I also thought it would help distract me, since I'm used to running with my running partner (who skipped this race because she had just done a turkey trot a few days earlier). Yes, Ryan LOVED the lights, but not enough to keep him from whining and throwing things out of his stroller. And Grandma battled the stroller the whole way, with her back spasming, apparently she was texting me begging for help (but my cell phone wasn't working)...happy birthday to her! I ran a good pace, but let's just say the course was not at all flat like the people had said, and the lights weren't at all distracting (I hardly even noticed them). I was ready to quit, but kept plugging along and could barely walk afterward! So another 5k DONE! Reagan didn't get to come like I had hoped, but the course was so undulating, I would have had a hard time pushing her! When we got home, she was much more relaxed (time away from her toddler brother will do that), so I definitely think she's headed in the right direction. Now, hopefully we can get her in her bed tonight!  

Saturday, November 29, 2014

Really bad day

So it's been a rotten one today for my girl. On a slight good note, she did finally sleep last night. I could tell when I went in this morning and started talking to her, she was very serious. Definitely not the same girl from yesterday. Thank goodness we had a nurse today. It's been brutal. Reagan has been very upset, lots of biting (requiring arm restraints), flailing, kicking, moaning. It's been awful. The only way I can describe it...imagine someone going through the most painful experience possible (child birth, a major wound/injury, etc) with absolutely no pain medication that works, no contractions that come and go...just nonstop unrelenting pain! That's what happens during her bad days. She's biting at anything/everything she's in so much pain. She squeezed my finger so hard today, it felt like she might actually break it (seriously)! Such a horrible thing to watch your child endure...EVER...much less, every week! Ugh. And don't even get me started about the craziness about refilling her Lortab prescription (one of the few medicines that seems to help her when she gets like this)...apparently something was passed a several weeks ago that requires a hard copy prescription for anything that contains hydrocodone (so according to Walgreens, that invalidates the 2 refills we have and we can't get it again until we bring in a hand written prescription)!! Hopefully she turns the corner quickly and won't need it tomorrow anyway! Please keep her in your prayers!

Friday, November 28, 2014

Still good

It was another night with little to no sleep for my girl! Thankfully she was still smiling this morning! She's been in a good mood all day. Very crunchy and tense in her body, but in good spirits! No nursing today. We've got some open spots due to the holiday weekend, yesterday, today, and Sunday are all nurseless days. Hopefully Reagan will behave herself! Her OT came and worked with her today and was able to get some good stretches in (she needed them)! Hoping she's able to finally get some rest tonight, but nervous as to what that might mean. Over the last several weeks she's been following a 5day, 7 day pattern (which if you count a bad day or two, still works out to a 14 day cycle). Unfortunately that means that the odds are against us tomorrow. Praying that whenever a bad day rears its ugly head, it comes and goes quickly! Better yet...just never comes!

Thursday, November 27, 2014

Happy Thanksgiving!

Still no sleep last night for my girl! On a good note...she was still in good spirits this morning, so our day trip to Houston was a go! However, about an hour before we left, Reagan had a huge leaky poo diaper! I was really worried at what this meant for our trip, but thankfully it only happened that one time and at least it was before we left! Both kids were very good the whole way there! Both looked like they might fall asleep at times, but neither ever did. It took us about 2.5hrs to get there and even though it was a little quicker than we even thought, we were all ready to get out of the car by that point! There was a full house, tons of food and kids, and loud music...a typical Guidry get together! Ryan was loving all of the action and he was enjoying dancing to the music! He did NOT, however, eat any Thanksgiving food other than some cherries from the fruit salad. Ugh. That boy. I was worried about how Reagan would do with all of the commotion and music, but as long as the back door was closed (where the loud music was playing) and we had her noise canceling headphones on, we were able to avoid a meltdown. She is definitely getting more sensitive. She's also had cold hands and feet today. I was afraid today might be a bad day, but she held it together and had a good one! We left just before 6pm and Ryan passed out cold immediately. We figured since he was in such a deep sleep, we'd stop right then to fill up on gas. Well, he woke up the second we stopped and then was awake for the whole drive back! Thankfully, both kids were very good on the way back as well. I put Ryan straight to bed, but Reagan was not winding down at all once we got home. At one point she seemed like she might actually lose it (lots of kooky vocalizing), but she settled down. Nothing was putting her to sleep though, not Lortab, not clonidine. We did eventually put her arm restraint on her because she was shoving her hands down her throat so much, there was no way she was going to fall asleep doing that! Mike laid down with her for a while and FINALLY she dozed off. Not expecting much sleep again tonight, but please keep her in your prayers. I'm very thankful that both kiddos cooperated today! That was definitely my Thanksgiving prayer! 

Wednesday, November 26, 2014

Less sleep, more smiles!

Tonight Reagan was really restless in the sleep department. She fell asleep last night on her own, but woke up around 2am and was WIDE awake. I gave her clonidine, but had to move her to her chair, she was kicking around so much in bed. She was pretty vocal when I went and laid back down in bed. She obviously didn't go back to sleep, because Mike later woke up and transferred her back to her bed where he was able to get her to fall back asleep. That didn't last long though and I thought I heard her kicking around right as I was leaving for my walk. When I got back, she was being super vocal...definitely awake! She's been great today. Super smiley again. She had speech and PT today and did well with both. Spent some time in the stander and even did a Thanksgiving craft with her PT!! She's still very into her hand, chewing it until it's completely red! Vocal at very appropriate times. We're pretty sure she's saying "hi" when we great her now! I've heard her say it to me, nurses, therapists, and today to my aunt that was visiting. My aunt Alice lives in Louisiana and works in a special needs classroom. She was wearing a mito shirt that a student's family had given her. Mitochondrial disease isn't as rare as people think. Hoping and praying my girl can hold out and have another wonderful day tomorrow. I'd even take a sleepy day! Our plans are to hit the road for Houston in the morning and drive back in the afternoon! It's going to be a looooong day! Praying for two very good kiddos!

Tuesday, November 25, 2014

Happy poopy girl

Reagan slept well last night, and woke up this morning a happy girl. She's been super sweet and smiley today. She had two therapies, PT and OT. Her OT taped her back with kinesiotape, in hopes it would help her activate those muscles and aid in better posture. It doesn't seem to bother or irritate her skin...just not sure if it's helping. With PT she did a lot of stretching and floor work. She also had 3 poos (2 major)...but it was definitely time for that. I spent some time on the phone today with insurance and emailing the tricycle company. Just trying to get this all wrapped up before the new year (when we switch insurances)! She's been very into her hand today, chewing on it and choking herself with it off and on. Lots of little cough/chokes from the spit! She sure is smiley and sweet though.

Monday, November 24, 2014

Good days

Today was a good day! Reagan slept well and woke up smiling! She had speech and OT today and did really well with both! She was following commands and using her hands well, which is always a good thing. She made it through speech but was trying to fall asleep right before OT, so her OT came anyway and somehow managed to keep her awake! She spent some time doing stretches and stood in her stander! Then she was awake and in a good mood the rest of the day! So glad to see her feeling better again. Tonight she was a little antsy and making quite a few vocalizations, but after a visit from the poo fairy, she seems much improved. Poor girl. All of that holding it in, makes for an unpleasant experience. Other than that, she's been super sweet and happy. We could tell last night she had turned a corner, definitely going to enjoy these good days!

Sunday, November 23, 2014

Rough day, but better tonight

So I was really expecting today to be a good day. It seems like lately Reagan only has been having one bad day and she's already better by the next day. That didn't happen today. For one, she was up a lot last night. Crying, moaning, just plain miserable. She slept a little this morning and was still asleep when the nurse got here. Unfortunately, it was our new PRN nurse's first day and she had a rough one. Thankfully, she's a good, experienced nurse and it didn't really phase her much. Reagan slept off and on all morning (with the help of medication), but then had a period this afternoon that was REALLY rough. Lots of screaming, flailing, was bad. Her nurse was definitely a little concerned. But she eventually got over it and then tonight, right as the nurse was leaving, she seemed to turn the corner. She had a little smile and just looked content. Tonight we even got some laughs out of her! Such a relief to see her feeling better. Whew! We are all going to sleep better tonight. Hoping my girl can get a good night's rest in her bed tonight! Thank you for your prayers!

Saturday, November 22, 2014

Bad days too soon

Sorry for the late posts! It's been a booger of a weekend! Here is Saturday's post...
Reagan slept last night but woke up this morning crying (I guess the stillness yesterday really was the calm before the storm)! At first, we were able to calm her a little, but she eventually escalated and then pretty much cried off and on all day long. We were in a constant rotation of Lortab/clonidine. Lortab was working a little better, but neither lasted longer than 2hrs at best. We had to restrain her off and on and her super human strength has definitely been challenging! She's asleep at the moment, but I have no clue how long that will last. Something tells me it's going to be a long one. Feeling defeated.

Friday, November 21, 2014

Busy (super calm) day

Reagan slept well last night and woke up this morning still very calm and quiet. She was very serious but did give her nurse a couple little laughs (not mommy though). She had a busy morning of therapy. A make up session of PT, immediately followed by speech, and then school/vision. After school we decided to take advantage of her laid back mood and go to the aquarium. Mike was still off from work so this was his first time to go! Ryan was a maniac running a muck and was this close from getting bitten by a Macaw! Daddy was definitely giving him more freedom than I normally would, and he was taking advantage of it! He pried off a starfish from the touch pond, had his arms all the way in the ray tank, got stuck up at the top of the play scape and refused to come down! Thankfully Daddy chased him down most of the time and Reagan got double attention from her nurse and me! Reagan was great and nothing seemed to phase her, but she also had really good head control and eyecontact and seemed to be taking it all in. Tonight she was tired, but not falling asleep. Finally she dozed off on her own around 11pm. I was amazed at how still she was tonight. Sitting with her hands laying to her side, palm up. Way too relaxed. Hoping that doesn't mean she's about to take a turn already. Hoping I'm wrong and her good days continue.