Saturday, November 30, 2013

Sleepy but so sweet

Reagan slept well last night but woke up around 5:30am. She was quiet, only making the occasional sound, but she was SO precious! Mike got up and laid down with her to get her back to sleep and she was really turning on the cuteness! She finally dozed back off and then continued sleeping...and sleeping...and sleeping! She was still out cold at 2pm when I decided that we had to go in and at least change her diaper! Well, of course that woke her up! She woke happy though, so that's good. She did end up dozing back off for a bit...guess she just wasn't ready to wake up yet! Definitely a sleepy sort of day! She was super smiley and sweet when awake though, so Grandma was really excited to see her doing so well on her birthday (today was Grandma's birthday)! Tonight Grandma and I went shopping and to dinner while Daddy watched both kiddos! Everyone behaved themselves and then Reagan had plenty of Mommy snuggle time before bed! Such a darling girl!

Friday, November 29, 2013

Another good one

Reagan had another good day today. She slept well last night but was up and kicking around early this morning! She was still sweet and smiley but a little less laughy. Tonight she had her third poop in three days ON HER OWN! That's definitely a record! Her nose is a little red and peely, I think her wiping at it constantly is finally taking its toll! Poor nose! She had speech and OT today (not everyone is on vacation)! We're so blessed to have such a good pair of therapists working with her!! They both believe in her and are determined to find her a way to better communicate with us!! Now, if only we could find a good fit for PT! Please keep that in your prayers! So all in all, another good one for my girl! I hope they continue! Grandma comes in tomorrow for her birthday and she's wanting to see a happy girl!!

Thursday, November 28, 2013

Happy Thanksgiving

Late thanksgiving post! Each morning waking up and running into Reagan's room to see what kind of day my girl will be having...it's like Christmas morning (only half the time you get coal instead of presents)!! Thankfully this morning our girl woke up sweet! She actually had a good day today! She's been giggly, sweet, and smiley! Who would have guessed?!?! Definitely an answer to prayers!! (She did poop on her own for the second day in a row...so maybe that helped a little!) Lots of cooking today for our at home Thanksgiving feast for two (plus nurse)! Way more than we could eat, that's for sure! Reagan and I never got out of our pjs all day (one bonus to not going anywhere)! We had a good day, good food, and bonding time for our little family! Hope everyone else had a good one too!

Wednesday, November 27, 2013

Surprisingly good (and giggly)!

Reagan slept well last night but she was a little restless. When she woke up this morning, there were no smiles...but there were no tears either! She was still very tense, but she gave us some laughs and we all breathed a sigh of relief! She's had a giggly sort of day. Lots of chorea (even worse tonight), chewing on her hands and gagging herself with her fingers, but overall a pretty good day (all things considered)! I really thought we were in for it today. We honestly never know what it expect from this girl! That's just one of the reasons that makes it so difficult for us to make advance plans for anything (including holidays)! And to tell you the truth, even though she's been as good as gold today, there have been signs of the not so good (freaking out during her bath today and getting increasingly stressed tonight). We are definitely not out of the woods for Thanksgiving just yet. Thankfully it's just us (and a nurse) tomorrow, so we don't have to worry about time restraints or ruining anyone's Thanksgiving with a hysterical child (that could be Reagan or Ryan)!! Thank you for keeping us in your prayers and Happy Thanksgiving!!

Tuesday, November 26, 2013

Not so great

Reagan slept well last night but woke up this morning in a not so great mood! She was very agitated so we changed her diaper and got her into her chair ASAP! She was this close to crying, but she didn't. And she did NOT want to be messed with! She was awake for a couple of hours but eventually dozed back off and then slept most of the day (without medication)! She was awake tonight for a couple of hours and she was very stressed. Lots of chorea, cold/clammy hands and feet, and a wild eyed zoned out look! Not good. Not good. I have no idea what tomorrow holds, but for tonight I just pray that she can stay asleep and get some rest! Please keep our sweet girl in your prayers!! (Oh and to top it off...I ran into our nurse's car today as I pulled out of our garage! Ugh.)

Monday, November 25, 2013

Tobii a go!

Reagan woke up this morning very tense and wanting to cry! She had a lot of gas and a poop, so I think that helped to relieve some of the pain she was having! She was still on edge, but we managed to distract her and keep her calm until the Tobii eyegaze rep got here! Both Reagan's speech therapist and OT rearranged their schedules to be here and while it wasn't Reagan's best day for therapy, she still did well enough with it to warrant a trial! We think with a little customization and practice, this might be something that could work well for her! We'll see!! We should probably get it to trial mid Dec...in the meantime her therapists are going to work with her on making choices with her eyes (opposed to using her hands). The rest of the afternoon was pretty low key. Just trying to keep her from getting too excited/agitated. Tonight she was noticeably on edge...lots of chorea and finger chewing. I tried holding her, but she was not comfortable being held. She definitely preferred her chair and even fell asleep there! Sweet girl!








It doesn't get more beautiful than that!

Sunday, November 24, 2013

So precious!

Reagan has been a sweetie again today! She woke up a little early again, but nothing too terrible. She's been ridiculously sweet today! So precious and so wonderful. I was holding her tonight and she honestly couldn't have been more sweet or precious! I kept thinking that I wanted to take a picture of her just grinning ear to ear at me, but I know that the camera couldn't have even attempted to show just how darling she really was! Still a little kooky vocal at times (like when she's annoyed with us talking or when her brother or the tv is too loud)! Hands and feet are still cold off and on, but her back wasn't sweating wet today so that's good! I'm hoping and praying she'll hold on and continue having good days! More importantly, I'm praying that she has a good day tomorrow (Monday)! An awesome day, really! Because she's got a communication evaluation with the Tobii rep tomorrow at 1:30! We need her to be "on"!! Please keep her in your prayers, we really need to find a way for her to communicate with us!!

Saturday, November 23, 2013

Sweetie

Reagan had a good day today. She's been sweet and smiley, but still a little excitable! We just took it easy today and tried to keep warm! Very cold and rainy here! Reagan's hands and feet have been a little cold (but hey it's cold outside) but she's been super sweaty on her back, so obviously some temperature regulation issues going on right now, but otherwise she's been good. I've been getting my fair share of snuggles the last couple of nights before bedtime, so that's nice! Tonight we watched Elf! (FYI...I LOVE Christmas!!) Reagan's not really dozing off on her own at all lately, but with the help of clonidine we are eventually getting her to bed...now if only we could get her to sleep in (she's been waking up between 4-5am each morning)!

Friday, November 22, 2013

Getting there

Reagan fell asleep last night thanks to clonidine! She slept well, that is, until she woke up at 4am!! She was very vocal and not really wanting to go back to sleep! Daddy picked her up and put her in her chair around 6:30, when she was starting to get a little agitated! She's had a pretty good day today! She's definitely still easily excitable (and vocal) so we've had to be careful with her, but she did well with all of her therapies and even trecked through the cold to go get some bloodwork and hip X-rays. The bloodwork was just her routine EPI-743 labs, although we are doing them a little early. I just wanted her checked out after that horrible bad day she had earlier this week! The genetics dr also added on a couple of tests and I asked her GI doc to add on a few vitamin levels to check! Reagan did great for the blood draw, despite the fact that the lady blew her first vein and then had to go to the other arm for more (I'm still doubtful she got enough blood for everything...)! Then we went downstairs to X-ray, we had orders from her PM&R doctor to get an X-ray of her hips (just to make sure everything still looks OK...it's been several years since her last one). Once we actually got back there it only took 5min from start to finish, but beforehand we had to sit in a loud, crowded waiting room for over an hour with an over sensitive child! Not fun! Then as we were leaving, a noisy car in the parking garage almost brought her to tears! Poor girl! Things still aren't back to baseline, but hopefully she'll continue to get there. I certainly wish her sleeping through the night would return, for everybody's sake!! She was definitely fighting it again tonight!

Thursday, November 21, 2013

Kooky day

Reagan slept well last night but woke early at 5am and would not go back to sleep. Daddy tried his best, but she was getting increasingly agitated and it was clear that she was not going to just lay in bed! So around 5:45am this morning I reluctantly got up with her. We did get some good snuggle time in, but she was definitely a little kooky! She's actually been a little kooky all day today. Very sensitive, easily wound up, tense body, not wanting to sit in her chair (preferring to be held)...and VERY vocal! There were many times throughout the day where it seemed that she might escalate (and even once when we decided to give her Lortab), but thankfully she managed to hold it together. I definitely think she was having some tummy pains today. That slow motility is still giving her some issues! Poor thing. Hopefully she'll get back to baseline soon! She did take a little nap this morning, of course, she was tired! Praying for a good night's sleep tonight and a more mellow day tomorrow!

Wednesday, November 20, 2013

What a difference a day makes!

Reagan slept like a rock last night, that is until 5:45am when she woke up super spunky and vocal (and SMILING)!! I got up and changed her diaper and then tucked her back in bed and she fell back to sleep. She slept until 9:30 or so and woke up a sweet, smiley girl! What a difference a day makes! Seriously, like night and day! I was SO relieved to see her feeling better! She's definitely still having some motility issues. Her GI system has really taken a big hit this bad streak! Things just aren't moving! She's even having substantially less wet diapers! It had been days since her last dirty diaper and today she finally went, but reluctantly (even with help). Not sure what we can do to help her in this department! I think we just have to wait for things to get moving again! Overall she had a pretty good day today! She's been happy but she was a little sensitive and got overexcited a couple of times during therapy. Tonight she was very much awake and she didn't doze off until late! Hoping she can get some more rest and wake up well rested and recovered tomorrow! Thank you for keeping her in your prayers!

Tuesday, November 19, 2013

Sleep at long last

Last night (and all day yesterday) Reagan was struggling...kicking and flailing and wiping at her face until it was raw! There didn't appear to be any chance she was going to settle down and go to sleep. I decided to pick her up and change her diaper and (sweaty) clothes and then I held her and sang "Santa Claus is Coming to Town" to her as we watched the end of Elf! Well, I don't know if it was her change of clothes, the fact that I was holding her, or my singing, but she fell asleep in my arms and was OUT! Mike was able to transfer her to her bed and she never moved a muscle! She looked so peaceful sleeping at last (on her own without any medication). Unfortunately it was all short lived. She woke up fussing maybe an hour or so later, right after we climbed into bed! Mike got up with her but she just fought him and fussed and flailed nonstop (with super human strength). I got up and gave her a dose of clonidine and she did eventually fall back to sleep, but again that was shortlived. She woke up again and was squirming in her bed and kinked her tube making her pump go off. I got up and fixed her pump, changed her diaper and transferred her over to her chair (because she was making gaggy faces). I gave her some Lortab but I'm not positive whether or not she ever went back to sleep! This morning when I finally dragged myself out of bed, she was wide awake and kicking in her chair. No crying, but her eyes were all gunky and purple from all of the crying yesterday. She has a bit if a Zombie look to her. I don't blame her, I feel a bit zombie-ish and I got a lot more sleep last night than she did! Poor girl. She was still very nauseous again this morning but that faded as the day went on. This morning when she woke up she had blood crusted in her right nostril. I'm wondering if that was from the Imitrex (in nasal spray form). I gave it to her in her left nostril yesterday and then this morning her right nostil was crusty with blood and then later this morning it started bleeding again! Very strange!! I don't even remember the last time she had a bloody nose (if ever)! The Imitrex is the only thing I can think of that would cause that, but Mike mentioned the fact that she was so crazy last night she might have whacked herself in the nose (she popped him in the face a few times so that's possible)! She's one strong girl! This afternoon she was still very tense and struggling, wiping at her face/nose nonstop, so I gave her a dose of Lortab. Finally around 2:30pm she dozed off in her chair and she's been sleeping ever since! Thank God! This girl really needed some sleep! It's 11:30pm and she's still out! I'm not sure if we should even attempt to move her. We'll see. I'm just praying she'll stay asleep and get the much needed rest her body so desperately needs!! Thank you for keeping her in your prayers!

Monday, November 18, 2013

Horrible, terrible, worst day in a very long time!

People have asked me about how Reagan has been sleeping lately, and even though she's still been having her same cyclical bad days, she hasn't had any of the up all night, crying nonstop every waking moments nights since we moved to Austin...that is, not until last night! My girl has been miserable for the last 24hrs. MISERABLE! She slept one period last night from about 3-5am (after a dose of Lortab) and then again from 5:20-6:20am (with a dose of clonidine)...but that was it for sleep last night...3hrs (for her and me)! And when I say she didn't sleep, I mean she was kicking and screaming and gagging and flailing nonstop! It was brutal! And this has pretty much continued all day long today. This morning I was desperate to help her, so I gave her a dose of Imitrex (a migraine med her GI dr prescribed). She did doze off 40min later or so and slept for about 2hrs. I "think" it helped her, I wonder if it might have worked better had I given it to her last night, at the first sign of bad days (but I didn't want to give her a new medication in the middle if the night). Like everything though, it did wear off and then she was back to kicking and screaming again! She's SO hoarse right now, poor thing. She's been crying A LOT! Last night and this morning she was still pretty nauseous (no throw ups, just retching), but it has improved a little throughout the day. Unfortunately, that's about the only improvement. She's still super miserable. Rubbing/wiping at her face/nose nonstop! Squealing in this pitiful high pitched, miserable voice. I have NO idea if she's going to sleep at all tonight, and I'm not sure I can make it another night with such a high stress level and only 3hrs sleep! I'm not sure what has caused her to plummet into such a horrible bad day so quickly (not even a week since her last bad day)?!?! I HATE this! I HATE to see my girl in such pain, and completely unable to give her relief of any kind! Praying she gets over this very soon and gets some sleep tonight! Please keep her in your prayers!

Sunday, November 17, 2013

No sleep & pain

Reagan did NOT sleep well last night! In fact, I'm not even sure if she slept at all! She was tired but she was restless...even though she was having long blinks, we never really witnessed her asleep! Today was a very similar day yesterday. No smiles, lots of tension, plenty of chorea, major temperature control issues (excessive sweating but ice cold hands/feet)...then add in a couple crying outbursts and nausea tonight...I have NO idea what's going on with my girl. She used to have way too many bad days, but everything was so predictable we knew when it was going to come and when it was going to go! Now, we have no idea what's going on! I certainly wouldn't think she would be due for a bad day right now, but tonight she sure was miserable and seemed to be in serious pain! We tried Clonidine, Lortab, & the Lidocaine pain patch (on her forehead, calves, and back of her neck)...nothing seemed to help!! She did finally doze off in my lap, but she woke up as soon as Mike tried to move her! He tried her in her bed, then in her chair, and then I even tried to help her poop (but she was way too tense for that to work)...she finally dozed off on her side on the floor! I'm praying she'll stay asleep and wake up feeling loads better tomorrow!! Poor sweet girl!

Saturday, November 16, 2013

Still off

Reagan slept well last night, but was wide awake and squirming down her bed when I woke up at 7:20! She's been in a decent mood today, but still not smiley yet. A few occasional laughs, especially when hanging out with Grandma! This afternoon she decided she was NOT a fan of Mommy! I was talking to her and out of no where she went into full blown tears! I tried picking her up, but she wanted nothing to do with me! She did finally calm down for Daddy, so I just kept my distance the rest of the night. She's definitely still "off"...chorea is still hanging around, cold/clammy hands and feet, & flushed pink cheeks! Come on good days, where are you?!?!



Busy

Reagan slept well last night, but she was up and rolling around in her bed by 7am! I got up with her and was surprised when her brother decided to sleep in (apparently he was up and at em super early so he must have wore himself out)! I started to get a little worried when he was still out cold at 9, so I broke one of my rules and went in and checked on him/woke him up! Thankfully he woke up in a decent mood (you never know with him)! Reagan has been a sweet girl today. Not super smiley, but content, with the occasional laugh. Busy day of therapy. PT this morning, then speech, then OT, followed by "school"! Busy, busy! Should be a good weekend for my girl!

Thursday, November 14, 2013

Better

Reagan slept well last night and woke up this morning calm and content. No smiles, but she's been sweet. And a little yawny. Still having little bouts of chorea/extension, but getting better! This morning she had vision therapy (with her new vision therapist, who was apparently out on leave for several months) and she did really well with it. Then she had an appt with the nutritionist for the ketogenic diet. This was really just to get this visit out of the way, because as of right now we have no intention on starting the diet anytime soon (because Reagan has been relatively stable lately), but we want to have it as an option, should things change. Then this afternoon when we got home we had just enough time for a bath and then she had OT! She was a rock star during OT, bearing weight through her arms, then swinging and following directions and playing with a guitar app! She had a good day! Tonight she was snuggly and sweet and spent some cuddle time on mommy's lap! So glad to see her feeling better! Looking forward to a good weekend for my girl! (I wanted to post a picture because she was so super cutie today, but she was moving and everything was a blur!!)

Wednesday, November 13, 2013

Communication

Reagan slept well last night and woke up this morning feeling a little better. She's still very tense, extending a lot and having lots of chorea, and is still very sensitive (the sun shined in her face and you would have thought she was being electrocuted)...but overall she's definitely improved. She has been fine with us interacting with her and she even tolerated PT and then a joint session with speech/OT! It's been another quick turnaround and for that we are very grateful! We are in talks with her speech therapist and OT about finding a communication device that might work for her. They both think she understands a lot more than she is able to communicate to us. After reading a wonderful blog post by Lily's mom (go read it, you will be glad you did), I contacted a rep for the Tobii eye gaze system and she's going to bring a loaner device for Reagan to trial! It's a big step, but I'm hoping it will lead us in the direction of finding a way for our girl to communicate with us! Very exciting! The rest of our day was pretty low key. Just staying inside, trying to keep warm! Tonight my girl dozed off in her chair and was OUT! I moved her to change her diaper and she never budged! Mike put her in bed, she was still out! Sweet dreams, sweet girl!

Tuesday, November 12, 2013

Bad day, but could've been worse!

Reagan slept the whole night through last night in her chair and she was still asleep this morning when we all got up! We tippy toed around her, but she did eventually wake up around 9:30am. When she woke, she was still noticeably agitated. She didn't cry, but she did fuss when we came near her (just to give her medications or try to pull her hair out of her face). When we picked her up to change her diaper, she was even more upset. She cried for a bit, but eventually settled back down. I decided to try the lidocaine 5% patch her PM&R doctor prescribed her. I really had no idea where to place it. Something is obviously bothering her on days like this, but we still really have no idea what! I've heard many mito patients talk about leg pain (and she does kick around a lot on bad days), so I cut two big portions of it to put on her upper thighs. Then I put the remaining strip on the back on her neck (for head/neck pain). She did doze off about 15-30min after applying the patch, so maybe it did help. Who knows. The piece on the back of her neck didn't want to stick (because of her hair), so we had to add some extra tape just to keep it on. I do think her head hurts (I'm not sure whether or not it's an actual migraine), but just trying to pull her hair back, she freaks out!! She's been dozing off and throughout the day. When she was awake, she was still very agitated and does NOT want to be messed with. She was supposed to have a GI follow up today, but I called them and they agreed that it would be more stress on her than it's worth, so the doctor is supposed to call me tomorrow. Tonight she was already showing some improvement. She didn't seem to mind us being near her and she even tolerated her brother's squeals and craziness! She even dozed off on her own! Praying she sleeps well and wakes up feeling much better tomorrow!

Monday, November 11, 2013

Very tense (and spitty)

Reagan did not sleep well again last night. She was very restless, laughing off and on...not a lot of sleeping going on! This morning, she was content, but sensitive. Easily startled and tense (which has gotten worse as the day has gone on). She's also been super spitty today, she's soaked a couple shirts and bibs! Lots of chorea too. Tonight she's been very zoned out, kicking nonstop, wiping at her face over and over again (it's hard to tell if she's rubbing her eyes, nose, or head). She'll startle and extend so much she looks like she's going to get up out of her chair! Totally and completely miserable. Like a bad day, but without the crying. Tonight it took both Clonidine and Lortab to get her to sleep, but she's still very restless. We're going to leave her in her chair tonight (because of the nausea and restlessness). Hopefully she'll get some sleep! No idea what to expect tomorrow! We're supposed to have a GI follow up appt in the afternoon, but not sure if we'll make it just yet! We'll just have to wait and see how she is when the time comes! Please keep our girl on your prayers!

Sunday, November 10, 2013

Happy, happy, happy

Reagan was restless again last night. She got crazier after the Clonidine and then settled down after the Lortab. She slept but woke up laughing and then just kept laughing all day long. While we do like laughs, and she does appear to be happy, there is a strong hint of crazy to these laughs so you just have to be careful with her when she's like this! She was good all day, had two good dirty diapers (both of which I had to help her go), and spent another relaxing day downstairs on the couch (still waiting for the paint smell to go away). Daddy hung her swing today! Yeah!! I didn't know if it was going to happen! There is a tiny crawl space in our attic up among the AC ducts. It's really way too small for Mike to be crawling up there (and he really had no desire to go up there), but I told him the only thing I wanted for my anniversary (tomorrow) and my birthday (Thursday) was for him to hang Reagan's swing!! So he risked life and limb today (or at the very least he risked falling through the ceiling) to get Reagan's swing up and running, which is going to make Reagan, Ryan, and me very happy!! Unfortunately, tonight Reagan did escalate. She went from laughing, to quiet with an agitated look on her face, to crying! I managed to calm her down, but this is not good. Her hands and feet have been ice cold and clammy and with her sleeping pattern being off and the laughing today, well, we know where this is most likely headed. I sure wish I would have already filled the medications the new doctor prescribed last week! Please keep her in your prayers! Maybe she can hold out at least one more day so that we can have a good anniversary tomorrow! Lucky number 13!

Saturday, November 9, 2013

Lazy painting day

Reagan was a bit restless last night. She's been sleeping so well lately, but last night she just didn't want to go to sleep. After a dose of Clonidine, she did doze off but it was a restless sleep and an hour or so later, she was back awake. Around 3am, she started getting more fussy, so I gave her a dose of Lortab. That finally helped her to go back to sleep. She was up an at em right after 8am this morning and she was a happy smiley girl again! We had some painters come and paint Reagan's room, the therapy room, and our master bedroom today. Mike wasn't thrilled about it (he thought the other paint color looked just fine), but I was ready to neutralize a little and get rid of some of the brown (I mean, it IS on every wall/ceiling in this house)! So it turned out to be a sort of birthday/anniversary present for me, since I would have been the one having to do all the labor! So with all the work going on today, we were banished from upstairs. We had all the windows open, but it definitely still smells. We're back up there tonight though, so hopefully we don't get high on the zero VOC/low odor fumes! Reagan had another good day. She had her moments (where her brothers jib jabbering was starting to annoy her or she was not happy with us talking), but overall she had a very calm, lazy day! She also seemed less congested, so that's good. Tonight she was resisting sleep again and it took Clonidine and Lortab to get her down. Hoping for another good one tomorrow!

Friday, November 8, 2013

New doctor, new ideas

Reagan slept well again last night and woke up sweet and smiley! She had an early session of PT and then we loaded up and headed in for her PM&R appt. Let me just say that I REALLY like this doctor! She was personable, took a ton of time with us, had obviously already reviewed all of her records, and had lots of great suggestions! She told us about a pain patch we can try with her. It's topical, not systemic, so we don't have to witty about it interacting with her other meds and it may work better since it doesn't have to go through her GI system to be absorbed. The only issue is...where to put it ! On her bad days we know she's in pain, we just don't know where! There will definitely be some trial and error with this! She also recommended trying nerontin again. She said Reagan was on a very low dose before and she thinks maybe she just needs a higher dose on her bad days. Maybe? We'll see. I liked her approach! She looked at the big picture, not just PM&R stuff! After the appt, we came back to the speech therapist waiting for us. Reagan had been great all day, but she was not loving speech today. She started vocalizing and then escalated to almost the point of tears! We had to take her out of her wheelchair and just hold her. She eventually settled down and she did fine with OT a couple hours later! The rest of the dry went smoothly, but she's still very congested and having a lot of sinus drainage! Definitely ready for this sinus stuff to pass! Hoping for a good weekend for my girl!

Thursday, November 7, 2013

All is well

Sorry for the late post...again! When I stay up til 12:30am, my brain doesn't allow me to write a coherent blog post!! Anyway, all is well with Miss Reagan! She had another good day today! Slept well, woke up smiling and sweet, she's a doll! She still has a super runny nose, but she's a trooper! I'm just hoping it's just allergies since we're all pretty congested! Only one therapy today, but she did well with it. Tonight she snuggled with mommy until she fell asleep! Love our cuddle time!

Wednesday, November 6, 2013

Dental appt and snuggles

Reagan slept well again last night, not waking up until we went in to change her diaper at 10am! We encouraged her to wake up because she had PT and a representative from the school system coming at 10:30am. She woke happy though and was a super sweet and smiley girl! She did well with therapy (despite just waking up) and then speech came shortly thereafter. She did well for that too! She's really been a super star lately when it comes to therapy! Then we had to take her in to Dell Children's for her dental appt. We dropped brother off with Grandpa (so much easier to not have him yelling in my ear when I'm trying to talk to doctors) and drove in for the 3pm appt. We were early, but they were not. We waited a while in a crowded office and then were finally taken back. They didn't have any of her records from Houston so we had to go through all of her medical/dental history, but I was pleasantly surprised with the dentist. She was very sweet (nice to finally see a dentist with some personality...her dentist in Houston had the personality of a mortician) and she was very pleased with Reagan's teeth. She did say that if she undergoes another procedure with anesthesia in the future (MRI, endoscopy, etc...) she would like to do a through cleaning and x-rays at the same time...but for now everything looked good. She put some fluoride on her teeth (which they never did at TX Children's) and we were on our way! She fell asleep in the car on the way home (we were stuck in lots of traffic) but woke as soon as we got back! She was a sweetie the rest of the night, snuggling with mommy...I love this girl! We've all been a little sneezy, runny, coughy lately. Not sure if it's just allergies or something else, but it sure hasn't dampened my sweet girl's spirit! So thankful for these sweet snuggly days!

Tuesday, November 5, 2013

Sleeping Cutie

Reagan slept well last night and then this morning...she just kept sleeping!!! She slept and slept and slept! We even went in and changed her diaper at 10:45am (which usually wakes her every time), but no, she stretched a little and then kept sleeping! She didn't wake up until 3:30pm, and that may have only been because her nurse was giving her medicine! She woke up happy though and just in time for OT! Her therapist did a lot of floor work with her (since she had been in bed all day), and she did really well with it. Tonight she was a little excitable. A little amped up and kooky (maybe because she had been saving up her energy all day)! There were a couple of times that it seemed she might escalate into craziness, but she held it together and eventually fell asleep on my lap (without medication)! I took her to bed and she's still asleep! Hopefully she has a good night's sleep, despite sleeping most of the day..it usually (thankfully) doesn't affect her night's sleep!

Monday, November 4, 2013

Sweet kooky girl

Reagan slept well again last night and woke up a sweet girl this morning. We decided to get her into costume today since she never got to put it on for Halloween! She was a good sport (better than her brother) and she looked super cute as a skeleton! She had speech at noon (private) and then speech through the school system and her teacher came 4:30pm. She did well for both, although she was a little sensitive to her therapist talking to the nurse (and had a big fat lip)!! She's still congested and was pretty snotty today (with a couple big snotty sneezes)! Tonight she was a little hyper/vocal and ended up having one major meltdown with tears and all! She kept doing this high pitched squeal in my ear...by the end of the night I had a splitting headache!! Eventually she settled down and finally fell asleep with the clonidine. Hopefully she's feeling a little more stable tomorrow!









You could say that Grandma gets into Halloween!

Sunday, November 3, 2013

Sneezy but good!

My sweet girl slept in this morning for the first day of daylight savings time! She didn't wake up til after 8am (which was really 9am)! Ryan, on the other hand, was up at 6am jib jabbering! Reagan has had a good day today. She's pretty much back to 100%! Sweet and spunky! Still congested with a side of sneezy (& runny)! Her brother has also had a few sneezes, I wonder if there's just something in the air right now? We took another walk today, it was a little chilly but nice. I think it's supposed to rain again this week, so I'm glad we were able to get out over the weekend! She's got dental and PM&R (Physical Medicine & Rehabilitation) appta this week, so it will another busy one!!

Saturday, November 2, 2013

Content but congested

Reagan slept well and woke up still congested but content. Today was a good day. She wasn't super happy or smiley, but she was content and definitely seemed to be feeling better (even giving us some laughs). We even went for a walk with grandma and brother, which she seemed to enjoy! So glad she made such a quick recovery!! She's a trooper, this girl!

Friday, November 1, 2013

So much better

Reagan slept well last night and woke up this morning (on her Daddy's birthday) feeling much better! She's had a relatively calm and subdued day today. She's taken a couple naps, still cold clammy hands and feet and keeping her hands in her mouth a lot (and no smiles), but she obviously feels loads better!! She's been a little nasally/congested, but otherwise good. I'm so relieved to see her make such a quick turnaround! Praying for even better days this weekend!