Thursday, February 28, 2013

Bad day & 23hr EEG

Ryan gave me another run for my money last night! He was relentless! I got up with him but then he'd either fall back to sleep and wake crying the second I laid him down, or he just wouldn't fall asleep and then scream when I tried to lay him down! Not good, not good. Reagan was snoozing and Reagan's night nurse even considered going to pick him up because he was being so rotten! We resisted though and eventually he fell asleep and stayed asleep. Unfortunately, shortly thereafter Reagan woke up crying! The beginning of a bad day. Crying, flailing, trying to bite herself! Clonidine didn't work but Lortab did help her fall back to sleep. So today was a definite bad day, but thankfully she slept off and on. We went ahead and pushed on with the 23hr EEG. While it added a whole new element of difficulty to the situation, I think it's good to get a picture of what's going on in that brain during one of her bad days (although it would have been my preference to get some bad AND some good). Anywho...I managed to get all of her meds in her and formula ready early tonight and left Daddy up at the hospital with Reagan. If you ask me, I think he got the good side of that bargain. Ryan SCREAMED nearly the entire drive home (of course he did, he refused to take a nap longer than 15min all afternoon). Hopefully that means he'll sleep tonight! And hopefully his sister will behave and sleep for her Daddy. We'll be headed back to the hospital first thing in the morning and should be done around 2pm tomorrow. Please keep my girl in your prayers! I'm hoping she gets over these bad days quickly and recovers for the weekend!





Wednesday, February 27, 2013

Content

Reagan slept well last night and woke up in a good mood again today. Less smiles and no laughs, but she was still very content. She had speech and OT this morning and then speech (through the school system) and "school" this afternoon...so a very busy day therapy wise. She did well with everything and then she even went for a walk with her nurse afterward (while mommy tried to put a cranky brother down for a nap). Tonight she was a little more stressed. No fussing or anything but she had more chorea and she was very tense. She's had gas all day, so it could be that she's having tummy pains, but I don't know. Her temperature regulation was off tonight as well. Clammy hands and feet and a super sweaty back. When she was dozing off, she kept jolting back up over and over again. Hopefully she hangs on at least one more day because tomorrow we're going in for a 23hr EEG. We go in at 1:30pm Thursday and they monitor her overnight and we go home on Friday around the same time. This is just a routine EEG, she hasn't had one in 1.5yrs, so it's time. Plus, we're switching neurologist's, so they always want to have a baseline EEG. So please keep my girl in your prayers and hopefully she'll get some sleep and behave herself tomorrow!

Tuesday, February 26, 2013

Just wonderful

Ryan was just awful last night (I'm guessing it was teething, but who knows), crying and making a commotion...while Miss Reagan slept like a log!! She was awake when I went in to get her this morning, but there was a stinky diaper that I think must have been the culprit! She has been a doll today. So sweet and so precious! Very engaging and attentive. Just wonderful! This morning we had a follow up with the mito doctor just to get the results of her exome sequencing that was ordered over a year ago!! The results were similar to what our friend who sequenced all of our genomes had already found. There is one potential mutation that can be ruled out by checking Ryan, so we'll probably do that at some point. While we were there, we also had some labs drawn for the EPI-743 study by our favorite phlebotomist. She's been sticking Reagan for years and always recognizes us and remembers exactly which vein is best in Reagan's arm! Reagan is such a pro with blood draws, she barely even flinches! I can't imagine how bad Ryan will be...especially considering he's never even had a shot!! When we got home Reagan had OT and then PT. She did great for both. Afterward we took a nice long walk outside...we have to enjoy the low humidity while we can!! Tonight we have a night nurse so Reagan shouldn't be a problem...now if only her brother could cooperate, maybe we could all get some sleep!!!





I actually have some video of the nurse telling Reagan to touch this bee...which she did over and over again!!


This is a weighted pillow pet!

Monday, February 25, 2013

Smiley girl

Reagan slept well last night. She woke up smiling this morning and she's been smiling ever since. She had a great day today. She had yet another appt to have her AFOs adjusted and she did really well with that. Then we came home and her vision therapist and OT were waiting for her. She did really well for vision and then shortly thereafter she had school. She's been very laid back and sweet today. Her hands and feet were a little clammy tonight (and she had a sweaty back), but no other issues. She was fighting sleep a little tonight but eventually dozed off with the help of some clonidine. Her brother is really giving me a hard time tonight. I'm not sure if it's the teething or what, but he keeps waking up crying. We've got a doctors appt in the morning though, so I sure hope he dozes back off soon (and his sister doesn't wake up to all his crying)!!

Sunday, February 24, 2013

Good day

I think Reagan slept fairly well last night. I was exhausted and her brother only woke up once, so I didn't spend a lot of time staring at the monitor. Both of them were awake and moving around at 7:30am, so that's when I got up. Reagan's tube had popped open (the extension was kinked right where it connects to her button) and she was laying in formula. Hopefully it didn't happen until she woke up and was moving around, but there's really no way of knowing how long she was laying in that wetness. She was a smiley girl though and she's been really good all day today. We went to a baby celebration for Mike's sister this afternoon and she did great with that. She was a little sensitive to all the noise when we first got there, but I put on her noise canceling headphones and that seemed to help. Her brother had a ball seeing all the other kiddos...not to mention there was no shortage of people wanting to carry him around. All in all, it was a good day for everyone. I'm hoping they both get some good sleep tonight and wake up happy and ready for the busy week we're going to have!





Reagan beside two of her cousins (who are both 3mo older than her)...


Ryan playing on the slide with his Aunt Kristy 

Saturday, February 23, 2013

Awake and a little sensitive

Reagan slept all day yesterday and then slept the night through as well. She woke up this morning a smiley happy girl. She has been a little sensitive today though. Mike's parents came over with some gifts and the wrapping paper noise set her off. She wasn't a fan of loud voices either. Hopefully she's a little more laid back tomorrow. Other than that, she's been good. I'm hoping for a good week this week!

Friday, February 22, 2013

Sleep all day

Reagan was wide awake last night (even though she had been up all night the night before and all day yesterday), that is, until I gave her clonidine. She dozed off almost immediately and then slept all night and the entire day today! She never really woke up...she opened her eyes a few times when we were changing her diaper or changing her position, but she was never awake for more than 5min all day. Poor girl. She needed her rest! Hopefully she'll wake up tomorrow feeling rested and happy! Her brother has been a real handful lately (but what's new). He'll be turning 1 next Saturday and if this is how he is at 1, I'm afraid for 2!! He's SO needy, he's still not sleeping well, and he's biting everything he can find (including me)! The other day after his haircut, he started scratching his head. Then the next day he was scratching it like crazy! I gave him a bath, washed his hair twice, but it didn't help. I called the doctor and they wanted me to bring him in the next day to get it checked out (to make sure it wasn't ringworm). So I gave him Benadryl...it didn't help. The only thing that seemed to help was putting a hat on his head! Anyway, the doctor doesn't think it's ringworm (thank God), but we're still not sure what it is! She's thinking contact dermatitis. Either the product they put on his head during or after the haircut or possibly something from the scissors or comb. Ugh. First haircut and immediately problems! I just can't win. He's still got redness and little red bumps that he scratches at occasionally. Sensitive skin...just like his sister (and his mother). I was hoping he would avoid my weird allergy issues but that doesn't seem to be the case. (Please continue to keep Lucy in your prayers...)

Thursday, February 21, 2013

Much better

Reagan was up the entire night last night. Thankfully we had a night nurse and she was happy to sit up with our girl and keep her company! And Reagan wasn't crying or upset...so that's a definite improvement. She's been a good girl today. Obviously she's feeling much better, even without sleep. She didn't doze off even once though. Her temperature regulation is definitely off  (cold hands and feet and sweaty back) and her chorea has increased (those legs are kicking nonstop), but she's been a sweet girl...giving us smiles and laughs. She was a tad sensitive to noises and voices, but overall good. This afternoon we went for a walk and our neighbor Uncle Johnny met us on our way back. He loves his little girl and Reagan sure does love him as well. He tells anyone and everyone about Reagan! She brings as much joy to him as he does to her! I'm hoping my happy girl is here to stay (and hoping she can get some sleep tonight)! Looking forward to a relaxing weekend, as next week is going to be super busy with appointments! (Please say some extra prayers for Lucy as she will be having yet another surgery Friday/tomorrow!)

Wednesday, February 20, 2013

Had a bad day...

Reagan has had a rough day. She didn't go to sleep until 1:30am or so and then woke up a couple hours later crying! Her nurse was able to get her to settle down and eventually got her back to sleep. When she woke up this morning, she promptly had two dirty diapers and then the crying started! She cried every waking moment, all day long. Thankfully she slept off and on with the help of Lortab and Clonidine, but neither worked for very long. Tonight around 8pm she finally stopped the nonstop crying. She would laugh, then fuss, then be quiet, and then turn on the tears...over and over again. Better than nonstop crying, but still very unstable. You can see the misery in her face. Her eyes are swollen from all the crying and she just has this really really sad look on her face. I hate seeing my girl like this. I'm not really sure what's going on! It definitely wasn't time for a bad day yet...her last bad day was Saturday!! I'm not sure if this was a bad day that was triggered by her tummy pains or if this was just her having a full day of GI pain unrelated to her usual bad days. At this point, I guess it doesn't really matter. However you look at it, we're still not able to find a successful way to control her pain...and that just plain sucks. I'm just hoping and praying that she can get some sleep tonight and wake up feeling much better tomorrow! Please keep our sweet girl in your prayers!

Tuesday, February 19, 2013

Good day...little meltdowns (and first haircut)

Reagan slept well last night but then at 6am she woke up crying! Mike went in and tried to soothe her and she quieted down but then started crying again (and woke her brother up)! We had no idea what was going on! I went ahead and just got up with them both. She settled down and was OK the rest of the day. Not sure if she was having tummy pains or what? She was actually pretty laid back today. She had three therapies...vision, speech, and PT and she did well for all of them. Then this afternoon we took a walk. The weather was great again today. So cool...no humidity. Unfortunately it's not going to last! It looks like we're going to have rain the rest of the week! Reagan was great all day but had another little meltdown tonight when I was talking to Mike. She even had tears! Again, no clue what set her off. I think it was us talking...but who knows. Grandma left tonight. Everyone is going to be sad about that. Ryan especially. He's a little attached. This morning we had his hair cut for the first time. Pretty cute! OK...time for me to get to bed. Enjoy the pics!





This morning...in matching jammies!




Before


After


Monday, February 18, 2013

She's back

Reagan slept well last night and then woke this morning a sweet girl! She's had a good day. She's been pretty easy going. A little laughy...especially tonight when it was time for bed. Her temperature regulation seems to be back to normal. All is good. No therapies today...so she just took it easy all day. Watched some tv, went swinging inside (it was raining outside), spent a little time enjoying Grandma. So glad to have my sweet girl back!

Sunday, February 17, 2013

Getting better

Reagan slept really well last night and she actually woke up in a decent mood. She was very calm and dare I say sweet. She fell back to sleep and took a nice little nap. She missed Grandma's arrival, but her brother took full advantage of that! When Reagan woke back up, she was not as happy. She had knitted eyebrows and wasn't thrilled to see anyone. She cheered up a little as the day went on and actually had a pretty decent day. She was pretty calm most of the day, but preferred to be left alone (and still had very cold, clammy hands and feet). Her chorea picked up a little tonight and she was having a hard time sitting still. She gave us a few laughs and smiles before finally drifting off to sleep. I'm hoping she's back to her normal happy self by tomorrow so she can enjoy some time with her Grandma!





Saturday, February 16, 2013

Bad day

Reagan dozed off last night without the help of clonidine and with a smile on her face...unfortunately that didn't last. Even though she slept the whole night through, she woke up this morning with a vengeance, crying and upset every waking moment. Clonidine really seemed to help today. We used it this morning and then again this afternoon and both times it seemed to immediately calm her down and allow her to fall back to sleep! Overall, not a horrible bad day. Yes, she was pretty upset this morning (and each time I changed her diaper), crying her breath away and turning purple. But she slept a lot and this afternoon she was even awake for a little while without crying. Tonight she dozed off without any medication and was looking so sweet and peaceful. I'm hoping she can get some sleep tonight and wake up happy for Grandma who is coming to see her tomorrow!

Friday, February 15, 2013

Sweetness

I'm not sure how much sleep Reagan got last night. She fell asleep on her own probably around 11:30pm or so and then was still asleep when we went to bed after midnight. But around 4am I heard Ryan crying and realized that the monitor was dead because the charger had become unplugged! When I plugged it back in, I could see Reagan wide awake, just looking around (who knows how long she had been awake). I got Ryan back to sleep, but Reagan never did fall back to sleep. Despite the lack of sleep, Reagan has been a smiley, content girl all day today. Very easy going and so super sweet (her brother has been quite the opposite). She had PT and vision this morning and she did great for both! I have no idea what's going on with her, but I like it!! Tonight I picked her up and held her and she proceeded to doze off in my arms (with a smile on her face)...makes my heart melt! Such a sweetie pie! I sure do love this girl. Praying for more sweetness this weekend!

Thursday, February 14, 2013

A happy valentines day for my girl

So our Valentine's Day was a bit crazy! Reagan is good...she didn't sleep much in her bed, but the night nurse was here and she got 3hrs and then another 3hrs. She's been sweet and smiley again today. She had lots of therapies...OT, Speech, & PT. The weather was so nice that once she finished all her therapies, we took her and her brother for a walk and then she went swinging for another hour or so outside. She's been very sweet and calm. She's still chewing on those hands nonstop (and we noticed her left middle finger nail is purple and coming up again from where she bit it months ago). Hands and feet still ice cold and clammy and her body is definitely overheating and she's sweating through her shirts...but overall a good day for my girl. Her brother...still a complete and total handful! Pitching fits and crying...he's blaming it on teething, let's hope that's all it is! Tonight Mike cooked an awesome Valentine's Day dinner for me and then just as he was taking my steak out of the oven, he forgot and grabbed the handle with his bare hand! Let's just say he was in excruciating pain the rest of the night (he said the worst pain he's ever felt). Probably not worth it, but it was a tasty dinner! I'm hoping Reagan can continue with good days (despite the cold clammy hands/feet)! Thanks for checking in on us...





Wednesday, February 13, 2013

Sweet smiley girl

Reagan slept last night, not great, but she did get some sleep. Thankfully we had a night nurse last night, so she was able to sit up with her and eventually get her back to sleep! On a good note, Reagan's been a sweet, smiley girl all day today. She was actually a little more laid back today than she's been in a while. Less on edge. She still wasn't a fan of loud talking, but overall she was good. She had a very busy day therapy-wise. She had OT, then private speech, then speech through the school system, and then school! Busy, busy...and she did great with everything. She did get a little excited while "coloring" during speech, but we were able to talk her down and all was good. Tonight her night nurse and I attempted to put her dynamic night braces on. Reagan was NOT a fan. She didn't cry, but the smile that had been present all day long, immediately disappeared! And she became very rigid, making it very difficult for her nurse to hold her (it was like she wanted to stand). We took them off after only 30min and she was VERY red. It's definitely going to be a process getting her to tolerate them and it also looks like they may need a few more adjustments. Needless to say, it's 12:30am and she's still wide awake, so I'm hoping the clonidine will kick in soon and my girl will actually get some rest tonight! Hoping for continuing good days for my sweet girl.
(Please keep my friend Heather's family in your prayers tonight...they are suffering an almost insurmountable loss today and can certainly use every last prayer they can get!)

Tuesday, February 12, 2013

Smiles for my girl

Reagan slept well last night and then slept in a little this morning as well! She woke up around 8:45am and I was thrilled to see smiles once more! She's had a good day today. Things were a little busy this morning. She had OT at 10am and during OT a vision therapist from the school system observed her for her 3yr evaluation. From about 11-12 the vision therapist worked on different things with her, accessing her vision the entire time. At noon her speech therapist came and worked with her some more. She was definitely a little sensitive to talking and didn't like her therapist talking to the nurse one bit! We managed to keep her calm though and she's been pretty calm the rest of the day. She had a few instances where she was starting to get a little vocal and you could tell she was getting agitated (especially with her brother fussing), but as long as you redirect her and don't let it get out of control, she's good. Her brother has been a total handful today. I don't know if it's teething, the sinus infection, or he's just a brat?!?! He has been a mess today! Lots of tantrums, scratching, hitting...seriously, when are they old enough to spank?? Something tells me this kid is going to need some spankings! Hopefully he'll sleep it off tonight! Hoping and praying both of my kiddos wake up happy tomorrow!!

Monday, February 11, 2013

A little on edge

Reagan slept well last night and then slept in this morning as well! She's had a weird sort of day. She was sleepy off and on. She slept in late this morning and then throughout the day she'd doze off just for 10min or so and then pop back up wide awake! She kept having moments of craziness where she'd get very vocal and be this close to losing it! Like at the doctors office...we took her and her brother in because they are both still super snotty! The doctor thinks they both have sinus infections (time to start antibiotics). Reagan got a little excited/vocal when the doctor was talking to her...she kept using this high pitched voice...finally I had to tell her to STOP TALKING! Reagan was this close to freaking out! We came home and she had "school"...needless to say, that didn't go well at all. We spent most of the time just trying to keep her calm. She was having a lot of gas today and then tonight she finally had a dirty diaper, so maybe that was partially responsible for her craziness? Maybe? She did seem to enjoy snuggling with mommy tonight! I'm hoping to see more of my calm, sweet girl tomorrow.

Sunday, February 10, 2013

Sleepy & stuffy

Mike got up at the crack of dawn this morning to go play golf and thankfully Reagan and Ryan slept in! That gave me a little time to get up, have coffee, and get medicines ready before trouble woke up! Speaking of trouble, Ryan woke up first, around 8:45am, and then Reagan woke up shortly thereafter. She wasn't really awake awake but I picked her up and put her in her chair in the kitchen as I fed Ryan breakfast. She moved around a lot but never really kept her eyes open long and the next thing I knew, she was back asleep again!! I eventually moved her back into her bed where she continued sleeping...I guess this was her sleepy day! She did wake up a couple more times and was awake for a longer stretch tonight, but it wasn't necessarily a good awake. She was very vocal and a little agitated...so we're not sure what to expect out of her tomorrow! She's super stuffed up and having a hard time breathing (she refuses to just breathe out of her mouth), I'm hoping she'll be able to get a decent night's sleep tonight! Thank you for keeping our girl in your prayers!!

Saturday, February 9, 2013

Better day

Reagan did not sleep much at all last night! I think she slept some til 1-2 am when her pump started beeping and I had to go in and trouble shoot. I'm not sure what was wrong with it (it was saying "No Food"), but she had the cord wrapped around her arm multiple times, so I had to untangle her and when I did, I woke her up! I don't think she ever went back to sleep!! To my surprise, today has actually turned out to be a better day for her than yesterday (even with the no sleep)! She has been pretty easy going today. Her brother has been a huge pain at times, throwing fits and screaming his head off, but she has remained unphased. She's been calm, just kicking those legs around at all times and putting her fingers down her throat! She did have a big throw up this morning, but then hasn't really been gaggy or chokey at all since! Her hands and feet are ice cold and clammy and her back can get quite sweaty! She's still very snorty/congested sounding (and her brother is still running like a faucet and a little coughy)...I've been using the electric nasal aspirator a lot (love it, so much better than a bulb syringe)! A lot of snot sucking going on here!! Reagan is not a fan, but Ryan detests it and screams bloody murder! Tonight she was actually smiling at me and looking me directly in the eyes...such a darling! I'm hoping my girl is turning a corner and going to be feeling better from now on! Please keep her in your prayers for continued good days!

Friday, February 8, 2013

Weird on edge day

Reagan slept well last night waking up right at 8am! She's had a weird sort of day today. For starters, she woke very serious, no smiles whatsoever, but still occasional crazy laughs. Her nurse went to brush her teeth and she freaked out and started crying! We managed to get her calm and then PT came and worked with her and all went well. You could tell she was still very much on edge, but she managed to keep calm. Then around 11:30, we headed over to the orthotic place for the second round of AFO fittings. I wasn't sure how she was going to handle it, but all went well (except for the fact that the AFOs still aren't right). She was getting a little irritated toward the end and I had to ask the orthotist to whisper...I think she thought I was nuts (but it really does help)! We made it home but she was quickly deteriorating and not 5min later she started with the crying! She cried for a while. Big cries, with lots of tears. I tried giving her half a dose of clonidine...nothing. I tried the other half and eventually she settled down and fell asleep. She didn't sleep long and although she woke very tense, she managed to keep from crying. She's been on edge ever since. I'm not sure what's going on! She's got cold clammy hands & feet. It's WAY too early for another bad streak!! (She had a bad day Monday!!) Please keep her in you prayers!!! She continues to battle this runny nose as well as her brother (he's losing though)! Ryan is a snotty teething mess!! Prayers for sleep and better days (and healthier kids) this weekend!!!



Thursday, February 7, 2013

Still snotty


Reagan was restless last night, and would only sleep in the arms of her night nurse! She did sleep though, so that's good. She woke up this morning still very snotty, but sweet. She's been a good girl today. She had OT, Speech, and PT today and did well with everything. She was even more laughy today than yesterday but not too crazy. Tonight she was a little tense when I went to give her a bath, but she settled down and was good the rest of the night. Her brother is still super snotty too...I'm hoping they will get over this soon, no one is breathing very well right now! Thank you for keeping our little ones in your prayers!!



Walkathon team pic (23 adults & 13 kids)

Wednesday, February 6, 2013

Snot too bad

Reagan slept well last night. Unfortunately, as we found out this morning, she was laying in a pool of formula and intestinal fluid! Her tube popped open last night, and even though the night nurse went in and checked on her multiple times (she kept squirming and kicking her covers off), we didn't find out what happened until morning.Somehow she still managed to get a good night's sleep, and for that I'm thankful. She's been a good girl today. Still tense, but giving us laughs by this afternoon. She had three therapies all back to back to back today and she did fine with all of them. She's still chokey/gaggy from the sinus drainage and has a runny nose (like her brother). Speaking of brother, Ryan slept better last night and has been super needy but OK. He's not looking as sick as he was the day before (except for the snot dripping down his nose). Hopefully everyone sleeps well tonight and we have an even better (less snotty) day tomorrow!

Tuesday, February 5, 2013

Snotty snorty kiddos

Reagan actually slept all night last night! (Thank you God!!!) Ryan slept til 3am and then he was up a lot after that. Reagan has had a better day today, but she's still definitely off. Still very tense. Prefers to be left alone (but she did make it through 3 therapies today without a problem). She still has super cold, clammy hands and feet. And she's been very nasally/snorty...even more so after using saline tonight. She's been coughing & gaggy too, but I think that's from the sinus drainage more than anything. Ryan has been pretty miserable today so we took him in to the doctor and he has an ear infection (probably from all the sinus drainage). So we've got a couple kiddos that are not feeling well right now! Please keep it in your prayers that they both recover quickly!!

Monday, February 4, 2013

Bad day, sick boy

Reagan didn't sleep very well last night. She was tossing and turning a lot. She woke up and fussed a little too...which was not a good sign! (Of course, her brother was waking up every 20min or so crying, so it was a LONG night!) And then...it was a looooong day! It's been an awful day for my girl. She woke up crying and cried all day long! Poor girl. The only thing that seemed to help her a little was clonidine. The only time she wasn't crying, was when she was asleep. Tonight she did have a little stretch where she was awake and calm tonight, but it was short lived and the crazy came back (and the arm restraint had to go on). I'm hoping she'll get some sleep tonight and wake up tomorrow feeling a little better. To top it all off, Ryan is sick. He's got a super runny nose and he's been super needy/fussy all day today (and a low grade fever tonight). I guess Reagan's congestion that started last week must be a little cold that has been passed on to her brother! Lovely. Please keep both of our little ones in your prayers...they (and their mommy) have had a rough day.

Sunday, February 3, 2013

Crazy chorea but hanging in there

Reagan was up a lot last night. She wasn't fussing, but she wasn't sleeping either. Every now and then she'd vocalize and I'd check the monitor and she'd be kicking around, eyes wide open! She's been good again today, so that was a huge relief. She's had a ton of chorea and her temp regulation is all out of whack, but she's still sweet and managing to keep it together even when her brother is throwing fits! Reagan is still very congested in the nose (and you can tell it's draining down her throat because she'll cough on it every now and then), but today her brother is sounding congested as well (and even sneezing here and there). I'm not sure if it's just allergies or something else. Hopefully nothing else. We took a nice long walk today, a mile down the road and a mile back...maybe that aggravated their allergies?? They are both enjoying the nice weather and the time outside. I'm hoping my girl continues to have good days. It's been a week now on the new formula and so far so good. Thank you for keeping her in your prayers!! Sorry...no walkathon pics tonight but here are a couple of cute random pics from a day or two ago...



Saturday, February 2, 2013

2013 UMDF Walkathon

Last night was another rough one in the sleep department! Reagan woke around 3:30am and she was very restless. The longer she was awake, the more fussy she got. We tried clonidine and then Lortab and eventually she did fall back to sleep. After all of that, she slept in this morning not waking up until after 10am! We were very nervous as to what kind of mood she was going to wake up in, but we were pleasantly surprised to see big eyes and smiles!! She has been such a good girl today!She's still very nasally/snorty (ever since she slept all day on Wed, she's had a stuffy nose). Her temp regulation is a bit off today as well. Clammy hands and feet and super sweaty back. Chorea has kicked into high gear as well. But our girl is holding her own and still smiling and being a sweetie. She was great for the walkathon (despite some very loud music) and she seemed to enjoy all of the attention. Her brother was sick of it about halfway through the 5k. We had a good turnout, lots of family, friends, and therapists and we raised just under $5000 for the UMDF. I'd like to thank everyone who donated this year, as it was an especially difficult year for donations (we raised about half that of previous years and the entire walkathon only raised about 1/3 of previous years)! The weather was great...it was a sunny day with the temperature reaching just under 80 degrees...maybe a little too much sun for a 5k on the hot pavement! We took lots of pictures, so I'll have to post those tomorrow. Here are a couple until then...



Friday, February 1, 2013

Slightly better day

Reagan fought us a little last night in the sleep department (as did her brother). She kept waking up so Daddy would go lay down with her. The second he laid down, she'd fall back to sleep...but the second he tried to get up, she'd wake back up!! Needless to say, none of us slept very well last night! Reagan woke up smiling though, so we were pretty happy about that! She's been a good girl today. Still a little on edge, still very vocal (especially when she's getting upset)...but overall slightly better than yesterday. She had PT this morning and OT this afternoon and she did well with both. We're just really hoping she can hang on and have one more good day...as the walkathon is tomorrow and we'd hate for her to have to miss it! Come on Reagan, you can do it!!! Tonight she dozed off without the help of clonidine...so I'm hoping she'll get some good sleep tonight as well. Thank you for keeping our sweet girl in your prayers!