Wednesday, November 30, 2011

Beyond nauseous

Reagan was back to no sleeping last night. She laid in her bed and kicked around pretty much the entire night. Mike attempted to get up and lay down with her at one point, but even that didn't seem to help. She was wide awake. Most of the day actually went fairly well. Her OT came this morning and said she performed like a rock star. I don't think she did as well for speech this afternoon, but she was hanging in there. She had a lot of chorea, super cold hands and feet, was a little zoned out, but not fussy at all or nauseous. That is, not until this afternoon. Right around 4pm the nausea hit her and it hit her hard. She spent the remainder of the day gagging, retching, and throwing up almost nonstop. It was extremely painful to watch. I drained quite a bit of fluid out of her stomach but somehow she still had lots of volume coming back up! It just doesn't make sense. Where is it all coming from?? I don't really have a choice but to switch her over to pedialyte tonight. I honestly can't remember the last time she was this nauseous (she bit her cheek again and was spitting out blood). This is basically back to where we before starting nortriptyline. I hate it. It makes me physically sick to watch. If she could just fall asleep, maybe she could sleep it off. But I've already given her clonidine and it did nothing whatsoever. I also tried a dose of diazepam it seems like it just made her more zoned out. She keeps closing her eyes only to tense up and awaken a few seconds later gagging. She also keeps arching almost out of her chair she's so miserable with this nausea. Horrible, just horrible. I have a feeling I'm going to be pulling an all nighter with her. Please say some extra prayers for her tonight. She certainly needs them!

Tuesday, November 29, 2011


Reagan slept fairly well last night. She woke up several times fussing but each time she went back to sleep fairly quickly. When she finally woke for good, right around 7:45am, there were no smiles to be found. She's been very tense and serious all day today. She's had a few whiny moments but overall she's been pretty quiet. Very frowny though. A constant scowl on her face. She's in one of those moods where she's almost happier kinda zoned out sitting in her chair rather than being held. Her hands and feet have been ice cold but her body gets sweaty very easily and her heartrate is averaging in the 150s. Definite signs of dysautonomia. This morning we took her in for a GI follow-up. Our appt was at 9:30am but we weren't seen by the doctor til after 11:30 (and that was until I spoke to a nurse and complained about the wait). We have this problem literally every time we've been to see GI, but today I had my own doctors appt at 1:30, so we were in a bit of a hurry. We spoke to the GI doc about Reagan's episodes of dysautonomia. He thinks slightly increasing the nortriptyline might help her with the nausea on the bad we'll probably try that. He also mentioned some other medications to "think" about to potentially help with the motility issues. Most of them have potential side effects that are even worse than the issues at hand, so as of now I'm not really willing to consider using any of them. So not a lot to report. He seemed happy that her "episodes" had lessened for a while but didn't really know what to suggest to help now that they are back. It's such a guessing game with this girl. This afternoon she had PT and actually allowed her therapist to work with her...which is surprising considering the way she was feeling. Poor girl. You can just tell she feels horrible during these times. I so hate that she has to go through this. If only we could figure out how to get her back to where she was before. Ugh. I hate these bad days! Please keep her in your prayers.

Monday, November 28, 2011

A bit off

Reagan was up again all night last night. She slept for maybe an hour or so, but then we heard her talking in her bed around 1am. She never went back to sleep. She did get a little fussy finally so Mike tried laying down with her for a while but she just wouldn't go back to sleep. Finally around 5:30am I gave up and decided to just get up with her. Her eyes were a little sensitive again and she was making gaggy faces but she was OK. That is, until Daddy got up. He walked in and started talking to me and immediately she burst into tears! I was able to calm her down but then she did the same thing when her nurse got here. I guess she was just in one of those moods...she didn't like us talking amongst ourselves. To her...well, that's OK. She settled down but got very nauseous and had some big throw ups (yellow bile) and then got very sleepy. She fell asleep around 10:30am and slept through til 3:30pm. She really needed that rest. She had literally been all weekend without any real sleep! She woke up in tears but recovered fairly quickly and the rest of the afternoon she seemed to be feeling a little better. She cracked a few smiles but overall she was pretty serious. I drained her tummy after she woke up and she still had quite a bit of fluid (some yellow) still in there. I think that helped though because she didn't seem nauseous at all tonight. She was quiet and snuggly and seemed happy to just sit in her chair and kick her legs around. She did fall asleep with the help of clonidine around I should probably get to bed ASAP! Please keep her in your prayers...

Sunday, November 27, 2011

Talking the night away

Our sleeping girl decided to not sleep last night! She wasn't asleep when we laid her down around midnight...but she did fall asleep a little while later. The problem is, she was back awake before 2am! And she was talking and talking. This went on all night until I finally got up with her at 7am. She was making a few gaggy faces and her eyes were very sensitive when she first got up. She continued to be extremely vocal all day. Squeals, laughs, babbling...she's been too cute. She did make a few squeals that sounded a little on edge, but she held it together and was good all day. And full of energy. No sign of sleepiness whatsoever. And that's including tonight. It's after 10:30pm and she's still going strong. I'm hoping she'll get some sleep tonight. I don't know what this week holds for her, as we've already had quite a few good days, but I pray that she'll hold on and skip the bad days this go round. Oh how we love this sweet girl...

Saturday, November 26, 2011

Another good one

Not a lot to report here. We had another wonderful day with our happy girl. She slept well again last night and woke smiling around 8:15am. She's been super precious again today. Super happy to just roll around on the floor or gnaw on my shoulder. Her new thing is pulling her shirt into her mouth and then chewing on her shirt. She's actually gotten very good at it. She's been very smiley and vocal again today. I definitely think that's one area where we are seeing improvement with the new medication (EPI-743). Shortly after starting her on it, we noticed an increase in her vocalizations. It used to be very sporadic...maybe once every several good days. Now it seems like she vocalizes some (and most of the time...lots) on nearly every good day she has! It's beyond adorable and I can only imagine how awesome it would be if it actually progressed into real communication at some point. If she could actually tell us what was bothering her on her bad days...that would be huge! Right now we're just loving these good days with our girl. Her bad days are so bad...but her good days are so good! Right now it's 11:50pm and she's laying in her bed making noises. She fell asleep for a little while in the living room but then all of a sudden got a second burst of energy and now I'm not too sure when she plans on going to sleep! She's been awake all day, so you'd think she's got to get sleepy at some point, right?!?!

Friday, November 25, 2011

Wonderful day

Reagan slept well again last night. She actually continued sleeping from 5pm yesterday all the way through til this morning. I'm not positive when exactly she woke up but I think it was sometime between 6-7am. I heard her moving around at 7am and she had already kicked off all of her covers. She was a happy girl though so I was certainly happy about that! She's been super precious all day today. Very smiley, very vocal. So darling. We took a walk and several of our neighbors came out to see her in her great mood. Right now she's laying all curled up on her Daddy's chest, smiling away and dozing off. It's been a wonderful day for our girl!!!

Thursday, November 24, 2011

A good, slightly sleepy Thanksgiving

Reagan had a good day today...and for that we are very thankful!! She slept the whole night through and continued sleeping til right around 10:15am. She woke up smiling and other than one little pouty lip that gave us a scare, she's been great all day. Shortly after she woke up things got really busy and LOUD around our house. We were a little worried that all the over-stimulation would upset her, but other than some increased chorea, she was good. She was wide awake all day (and even had a few licks of sweet potato pie) but then shortly after everyone left...right around 4pm...she started looking a little sleepy (of course...we all were). She got very still and kept dozing off here and there. By 5pm, she was out cold. I put her in her chair, thinking it would be nothing more than a nap, but she kept sleeping! She'd move around and stretch, but she never opened her eyes. Finally around 8:30pm, we put her in bed. Hopefully she'll sleep through the night! She's definitely sleeping a little more than usual the last couple days, but I guess her poor body has to catch up after all of those bad days!

Wednesday, November 23, 2011

Finally sleep

Reagan finally slept last night!! Sure it was in her brown chair (in the living room) but at least she slept!!! We attempted to put her in her bed, but that didn't work out. After that, we were happy to just get her back to sleep! She actually slept all the way through til 10:30am...when I tried to pick her up and put her in bed. She woke in better spirits, so that was a relief. She's been pretty good and mild mannered all day. She was a little nauseous, making the occasional gaggy face, but overall she's been good. This afternoon she did fuss a little and look like she might cry, but she had a dirty diaper a few minutes later so maybe her tummy was just hurting her. I'm hoping we're in for another good night's sleep tonight and a happy day tomorrow for Thanksgiving. We have some of Mike's family coming over so I sure hope she behaves herself!! Thank you for your prayers!!!

Tuesday, November 22, 2011

Another bad one

Today has been another horrible day for Reagan. She didn't sleep well again last night. We put her in her bed and when she woke crying around 2am Mike got up with her. He was able to get her back to sleep eventually but he didn't dare try to put her back in her bed. He left her in her chair where she slept til about 5:30am. That's when I got up with her and boy was she fussy...and awake. She actually cried for most of the day today. We took her in to the pediatrician just to get checked out, but ears and throat look fine. She did have three liquidy diapers today (one of which ended up on her nurse's pants)...not sure what that's about. This morning I switched her from pedialyte to half pedialyte/half formula. She's been super nauseous all afternoon. Maybe her tummy wasn't ready for formula yet. I don't know. If all of this wasn't enough, I realized today that we forgot to do her 4wk blood draw for the EPI-743 study last Friday. So this afternoon, we had to drag her back in to the doctor's office for a blood draw. Thankfully, her mood had improved a little by this time and she was actually well behaved for the blood draw. Tonight she's been much better. She's still very anxious, moving a lot, and super nauseous...but she has stopped crying and that's a huge improvement. I'm hoping she'll be able to get some sleep tonight and have improved days from here on out. These long nights and bad days are wearing on us all.

Monday, November 21, 2011

Really bad day

Oh what a night (and what a day)!!! Reagan didn't really sleep at all last night. Maybe an hour or so after her Clonidine and then she was awake and she was crying. Mike and I took turns staying up with her but she didn't even come close to falling back to sleep. She would cry and fuss off and on but overall she was just very tense and having tons of chorea (we had to put her arm restraint on to keep her from biting herself). She did NOT want to be held so she spent the whole night in her brown chair. Then this morning the non-stop crying started. Literally every waking moment. We haven't seen her this miserable in a while. Tons of chorea, sweating profusely, tense and arching...a horrible bout of dysautonomia. She had three big throw ups and then finally fell asleep (I switched her over to pedialyte for the rest of the day to give her tummy a rest). She took a decent 2.5hr nap but then woke up just as hysterical as before. We tried Lortab (tylenol with codeine) and it did absolutely nothing for her. Then this afternoon I gave her a dose of Diazepam, her third dose ever (the first two did nothing). We gave her a bath right after the Diazepam and found her falling asleep in the bathtub! We got her out and put clothes on her and she'd occasionally cry out, but she more or less stayed asleep! I'm guessing it was probably a combination of the Diazepam and the warm bath that did the trick. She slept for about an hour and then woke crying once again. As the night went on, the crying turned into moaning/fussing, with periods of stressed but quiet. She kept yawning and trying to doze off but each time she would fall asleep, a burst of chorea would hit and wake her up. I know she's exhausted...I just hope she's able to get some sleep tonight and I pray for a better day tomorrow for my girl!

Sunday, November 20, 2011

Headed in the wrong direction

Reagan did not sleep well last night. She woke around 4am so we tried putting her in bed with us...but she was not going back to sleep and just kept kicking around nonstop. Finally around 4:45am I gave up on her going back to sleep and I just got up with her....we've been up ever since! She was antsy but OK. She actually made it through the first half of the day without a problem. I could tell she was off (super clammy hands and bad day smell), but she was still behaving herself. My stepmother even took her for a walk and she was fine the whole time. It wasn't until around 12:30pm when she started fussing here and there. She was pretty gaggy and I drained a ton of fluid from her g-tube (but she never threw up). She spent some time outside swinging on the swing and she was good the whole time. It wasn't really until late afternoon/night that she became more uncomfortable. Non-stop chorea, rubbing her face, grunting, gagging...overall just not right. When you hold her she's SO tense and she arches a lot, she just can't get comfortable. She seems a slightly more content in her chair but she's just so uncomfortable, I have no clue how this is going to pan out tonight! I got less than 5hrs sleep last night, so I'm pretty exhausted! Come on clonidine!!! I'm hoping this is the worst of it and that she'll avoid a full out bad streak this time around. Please keep her in your prayers.

Saturday, November 19, 2011

Hanging in there

Reagan slept well last night. She fell asleep late (with the help of clonidine) but woke back up fairly quickly. Mike laid down with her and thankfully she went back to sleep without a problem. She was awake by 8am when we were rushing to get out the door to leave for our tennis match. She was a little clammy but calm. My dad and stepmother came in last night so they could watch her for us. Reagan was a good girl and she even behaved herself for a couple of walks around the neighborhood. She's definitely giving signs of impending bad days (hands, feet, and nose are all ice cold but her body is very sweaty and she has that "bad day smell") but so far she's hanging in there and has been pretty mild mannered and quiet today. I'm hoping she'll fight them off and keep giving us good days. We did start her on her full dose of EPI-743 yesterday. She's now getting 100mg 3x a day (we went up from 2x a day). I'll be interested to see how she does at the full dose. Overall, I think it's hard to say what if any improvement we've seen lately because she went from being sick then straight into bad days (which could have been triggered from being sick). But I do think we're definitely seeing an overall increase in her vocalizations. I would love to see less bad days...but I'm not sure if this medicine will necessarily work for that. Please keep this in your prayers...and that we can avoid the bad days this go round!!

Friday, November 18, 2011

Still good but a little off

Sleep last night wasn't as good as I would have hoped for...Reagan woke us up at 3am "talking". We let her be for a while, but she just wasn't going back to sleep! Mike got up and laid down next to her and was able to get her back to sleep fairly quickly. Then around 6am we heard her talking again. She's basically been up since 6! She's been good today although I've noticed a few quirky little things. Her nose and hands have been a little cold and clammy and her body has been a little sweaty. This morning she was acting sensitive with her eyes but not as much this afternoon. She also had a throw up and has been acting gaggy. Lots more moving today...she's been hard to hold onto. She's been sweet though...with the occasional laugh and lots of vocalization. She had speech this morning and her therapist went over a recent evaluation she performed. When this therapist first started working with her (I think back in May), Reagan was at about a 5month old she's at 1yr 1month! That's quite a bit of progress! Now, this isn't really an evaluation of things she's actually's focused more on following directions and commands. Of course, all of this is subjective, but I'm just happy that someone is seeing improvement! This afternoon she had OT. She did a great job for OT as well. Even though there were a few things off with her today, I'm glad that overall she was still her happy, smiley self. Hopefully this will continue. Tomorrow Mike and I are playing in a tennis tournament and my dad and stepmother are driving in to watch Reagan for us! She better behave herself tomorrow...and sleep tonight! I'm exhausted!

Thursday, November 17, 2011

So happy

Reagan has been such a good girl again today. She went to bed a little late and then woke up up early at 6:30am this morning..."talking"! She's so funny! She has been such a talkative girl lately...maybe it's the EPI-743? Who knows. I just love to see her happy. She was looking a little sleepy right around 9am...she took a little 10 minute catnap and has been awake and going ever since! She had "school" and PT this afternoon and then she spent an hour or so in her stander. We had a hard time fitting her in her stander today. She must have grown another two inches or so, everything was way off (with no more room to grow)! I'm afraid it may be time to get another stander! Reagan was perfect though and didn't seem to mind. She's just been so smiley, so alert, and so's great to see her so happy. Now...what can we do to get her to be like this all of the time? Please keep this in your prayers!

Wednesday, November 16, 2011


Reagan has been a darling girl again today. She slept all night last night and then kept sleeping this morning and didn't wake up til right around noon! I guess today was a bit of a catch up day. She woke happy and with plenty of time to wake up and get ready for her 1pm occupational therapy! During OT she was going to town with a raspberry lollipop...she even grabbed it and pulled it to her mouth! This afternoon we took her out on her tricycle for the first time in a while. She seemed to enjoy it...although she does get tired and we constantly have to tell her to pick up her head so she doesn't get whacked in the head by the handle (she can pick her head up on command...although you can tell it's still hard for her to do). She's been super talkative again today. She was chatting it up at Bible study tonight and now it's 11:20pm and she's still talking away! Hopefully the Clonidine kicks in soon!

Tuesday, November 15, 2011

Happy girl

Reagan has had another great day today. She slept the whole night through and woke as smiley and precious as can be! She had OT and school today and was great for both! She's also been quite talkative today. No naps...just wide awake, smiley, and sweet! She's such a happy girl when she's not sick or having "bad days"...I wish she could be like this all the time!!! Mike and I are still recovering from our lack of sleep last week! Hopefully she sleeps the night through tonight as well! Thank you for your prayers for our girl!

Monday, November 14, 2011

Good day

Reagan slept last night!!! Yeah!!!! And she woke just as sweet and smiley as can be! I can't think of a better birthday present she could have given her mommy! She's been a doll all day. She had three therapies today...speech this morning, then vision, and then speech through the school system! She was great for all of them! She was so much more calm today. There were times when she would kick around or have her hands in her hair, but it wasn't that same nonstop moving associated with the chorea. She did cough a couple of times (and sounded like she might gag), but she was OK. This afternoon I picked her up and was holding her. She snuggled up to me and was making all kinds of super cute sounds...then the next thing I knew she was asleep in my arms! She was OUT. I thought maybe she was just going to take a short nap, but she ended up sleeping from 5-9! She woke up darling again and was up til 11:45 when she dozed off while talking to us. Such a cutie. Hopefully she's able to get some decent sleep tonight. We could all sure use it!

Sunday, November 13, 2011

Our girl is back!

Whew! Last night was another rough one. Reagan was not falling asleep and she was still SO restless. I tried giving her some diazepam but it didn't seem to do a thing for her. She wasn't dozing off even after the clonidine! Finally she fell asleep around 11:30 but I didn't get to bed til about 12:15. And guess who woke up at 12:30 !?!?! She was super upset, kicking and screaming nonstop...I thought I was going to lose my mind!!! My mom was finally able to get her to settle down a little and then Mike stayed up with her so that I could get some sleep. I got back up at 4am and then laid on the sofa beside her (wide awake and moving nonstop). She never went back to sleep last night but her mood wasn't that bad this morning. She was very gaggy and had a few really big throw ups (one traumatic one while she was laying on the floor after a diaper change and it came bubbling up out of her mouth). I stopped her feeds to let her tummy rest for a while. Finally around 10:30am she dozed off in her chair. Mike was able to put her in her bed, where she slept til about 2:30! That's the most consecutive sleep she's had in days! She woke up and was just as sweet and cute as can be. She's having a lot less chorea (still some, but less), her hands/feet aren't cold and clammy anymore, and she no longer has that dazed/zoned out sort of look on her face. I switched her feeds from formula to pedialyte for the rest of the day. She's still a little spitty (with gunk in her throat), but no more throw ups since. I'm hoping she's out of the woods now and headed for good days with sleep filled nights! Thank you for your continued prayers for our sweet girl!

Saturday, November 12, 2011

Dysautonomia is a mess

Reagan had a horrible night last night. She fell asleep with the help of clonidine but that only lasted 1.5hrs. She woke around 1:30am and she was cranky. I got up with her, fought with her for a while trying to hold onto her, but when she's like this she just isn't happy being held. I put her in her chair and she was slightly more calm but she never attempted to doze even once. She was WIDE awake. Finally around 4:45am I made Mike get up with her so I could go get some sleep. Mike dozed on the sofa but not Reagan. I got up at 8am to find her still wide awake and kicking. There's no doubt the bad days are back. Her dysautomonia is making us crazy. She's got constant chorea (she can't sit still for even a second), her temperature control is way off and she's sweating profusely, her hands and feet go back and forth from hot/clammy to cold/clammy, she's constantly trying to bite her hand, she's beyond tense and constantly arching, and she's not sleeping. I hate to see her like this. And it's so frustrating that after dealing with these symptoms for two years we still have nothing we can give her to relieve her symptoms or at least knock her out! This morning Grandma drove in and Reagan did give her some laughs (crazy laughs, but laughs nonetheless). This afternoon she's been all over the place...crying, laughing, quiet...but NO sleeping. I'm hoping the clonidine will work at least for a little while tonight...this girl really needs some sleep! Please keep her in your prayers!!!
*Oh...and she just had some redish drainage out of her g-tube...what could that possibly be from?!?! We've seen clear, yellow, and even some brown but never red. I don't like that, I don't like it at all.
**Found it. She bit the you-know-what out of the side of her cheek! Mystery solved. Poor thing!

Friday, November 11, 2011

Bad days are back...

Reagan had a bit of a restless night. She fell asleep late but then woke again and was very fussy. I picked her up and sat up with her for a while. She was in this weird half awake-half asleep state. She kept tensing up her arms and moving her head back and forth (definitely some neurological stuff going on) all the while keeping her eyes mostly closed. She was very tense and not at all comfortable. It took a while but she finally let go and became calm and still...that's when I knew I could finally lay her back down. She still woke a few times, fussed and flailed a little, then went back to sleep. She woke this morning in a decent mood. Not super happy, but OK. She had speech and vision therapy and was a good girl for both. Then this afternoon she had a big meltdown. She started freaking out while having her diaper changed and then just went ballistic for a while. Lots of tears and screaming. She finally calmed down and fell asleep for a bit and then woke a little calmer. Her tummy has had quite a bit of air and drainage over the last couple days and today we drained off some yellow bile as well. No throw ups, but she did have a little gagging that sure sounded like she was going to throw up. She also had a big dirty diaper this morning and that may have caused some tummy discomfort as well. Then this afternoon she had another big meltdown, cried for a while and fell back to sleep. She woke and was OK for a little while, but that quickly changed and then she pretty much cried nonstop the rest of the night. She also bit her left middle finger so hard that she broke the skin on the top and the bottom (and severely bruised it)! I actually had to pull it out of her mouth because she was clenched down on it! Not good, not good. So needless to say...she wore a restraint for the rest of the night. This is definitely a full fledged bad day...and it sucks. I hate that she has to go through this! It's been a rough afternoon and sleep tonight doesn't look good...neither does our entire weekend. Please keep her in your prayers!
(Oh is Mike and my 11th wedding anniversay...on 11-11-11!)

Thursday, November 10, 2011

Long night, long day

Reagan had a bit of a rough night last night. She woke up fussing so I sat up with her for a while. I was exhausted and falling asleep myself but Reagan wasn't really cooperating. Eventually she fell back to sleep and I put her back in bed. Not even an hour later, she woke crying again. This time Mike got up and laid in bed with her. Eventually she fell back asleep and slept through til morning. Poor Mike had to get up at 5:45am to go to a funeral 3hrs away. Max, the little boy I had asked everyone to pray for last week, passed away. He was a triplet with some recent immune issues but overall a fairly healthy little boy. He was exactly one week older than Reagan. Please keep his family in your prayers. I know it was a very emotionally exhausting experience for Mike...not to mention already being physically exhausted! It's been a long day for me as well. I woke this morning feeling sicker than ever. I immediately called and got a doctors appt for this afternoon. Still not quite sure what I have. The doctor gave me some antibiotics and definitely thinks I have a sinus infection (since this has been going on for over two weeks)...but I still wonder what's going on with my breathing. I'm not wheezing or anything but I have this constant shortness of breath. I don't like it. Reagan has actually been slightly improved today compared to yesterday. She wasn't emotionally sensitive like yesterday but she was more physically sensitive. She took a nap this morning and slept right through what was supposed to be vision therapy. She just seems off to me. I don't know if she's fighting off some bad days or what, but she's just not herself. Hopefully we can all get some sleep tonight, because we certainly need it. We HAVE to get over this upper respiratory junk! Please continue to keep us in your prayers!!

Wednesday, November 9, 2011

Off again

Reagan had a bit of a restless night last night. She kept waking up and crying out, but then she'd fall back to sleep. This went on pretty much all night. When she woke this morning she gave me a few smiles, but it was immediately apparent that she wasn't going to be the same happy, smiley girl we've had the last few days. Something was off. She was more serious today, with only the occasional smile. She seemed a little groggy...maybe from the restless sleep last night? She's also been very sensitive to us talking amongst ourselves. Me talking on the phone, talking with Mike, talking to her therapist all triggered tears and crying from her. She also cried a few times tonight for no apparent reason and seemed to be in pain. I'm not really sure what's going on with her. I don't know if today was just a fluke or if this is a trend and the next few days are going to be rough ones. I do know that I've been feeling worse again. My sinuses were horrible yesterday and today I've got a sore throat and tightness in my chest. Not good. I guess I should probably go in to get checked out...although I doubt there's anything they can give me. Please keep us all in your prayers. We really need to beat this sickness and get back to normal again.

Tuesday, November 8, 2011

Precious girl and walkathon info

Reagan has been a precious girl again today. She slept the whole night through and woke stretching and smiling from ear to ear. She's still pretty active and a little hard to hold, but her mood just couldn't be better. I just can't get enough of these smiles! Her nose is still runny and she's still having the occasional snotty sneeze, but my allergies have been INSANE today, so it's hard to tell if she's still recovering from whatever upper respiratory thing we all had last week or if she's just dealing with allergies like Mommy. Today she had "school" and PT and she was a doll for both. She stood in her stander for a full hour after PT without so much as a peep. She really is a good girl when she feels well. Today was the first day that she didn't have a dirty diaper. Ever since last week, she's been having 1-2 loose diapers a day, which is SO unlike her. Maybe she's finally getting back to normal (although I hope she continues going a little more frequently...normally she goes way too long without going). We'll take some normal, easy going, happy girl days!

*One thing I would like to mention...The date is set for the 2012 Houston Energy for Life Walkathon. It's going to be Saturday Feb 4th at 2pm. Our team Rallying for Reagan is hoping to raise awareness and as much money possible for mitochondrial disease research and we would love for everyone to help us in our efforts! For those of you that are local, please feel free to join us! But if you can't attend, please consider making a donation to show your support! Every dollar brings us one step closer to a cure! I'll do another more detailed walkathon post in the next couple weeks, but feel free to go check it out and register now!

Monday, November 7, 2011


Reagan slept again last night and woke all smiles again this morning. She was awake for a couple hours, then took a little cat nap, and woke just as happy as can be. This afternoon she had a dentist appt. She hasn't been since February. The dentist pried her mouth open, glanced around with his mirror, used his pick to push on a tooth or two, and determined that her teeth look fine. She has a coating of tartar that is common with kids with don't eat by mouth, but he said it's not that bad right now (at some point she'll have to be put under so they can clean them) and he didn't see any cavities. Good news. She's still quite congested, so I don't think she was a fan of him sticking his hands in her mouth (when she needs to breathe through her mouth). She was a good girl though and we were in and out pretty quickly. If it's possible, she has been even more energetic today than yesterday! And still spunky. She had speech this morning and then again this afternoon (private and through the school system)...although I think she really waited to turn up the personality til tonight. Squealing with excitement and moving, moving, moving. I don't think I'd call it chorea per se but she has been very active. Tonight I was tickling her (on her tummy) and she was cracking up each time I did it. Too cute. She's still going strong right now and it's after 10:30pm...not sure when she's going to start slowing down. Hopefully she calms down a little and is able to get some sleep tonight!

Sunday, November 6, 2011

Spunky girl

Reagan slept well again last night. Mike was pretty restless (and therefore so was I) but Reagan never made a peep. She must have woken up at some point because this morning she had all of her covers kicked off and her arm was up over her face covering her eyes. She's been much happier today. Super smiley and snuggly. She did take a little nap this morning but then she woke up and has been wide awake all day. She's actually been super precious and very active. In her special tomato seat we're really having to watch her closely now (or put her harness on her). She'll lean all the way out of it, to the point where her head is almost touching the ground (see pictures below). She's actually fallen out of it twice (while Daddy was watching her), but thankfully she's never hurt herself. We rarely ever used to use the harness before (because we didn't need it), but now we have to make a point of using it all the time! I am glad to see that her spunky attitude is back. Other than a runny nose, some gunk in her throat (one throw up this morning), and the occasional sneeze (oh and another stinky diaper)...she seems to be back to her normal self. Hopefully Daddy won't reinfect either of us!

Saturday, November 5, 2011

Some smiles

Reagan finally slept last night (with her humidifier running full blast and the smell of vicks in the air). She woke up around 6:30am and she was not happy. Mike tried laying with her but she wasn't having it. He got up with her so I could stay in bed, but around 7:45 I decided to just get up because I could hear Reagan still crying. Needless to say, she had a really rough morning. She was in a horrible mood, she had another loose diaper, and a few throw ups. She's actually had 5 throw ups today. I'm wondering if this is nausea associated with bad days or what (her hands have been cold and clammy all day too). On a good note, her mood has been much improved this afternoon...even with the nausea. Maybe the Tylenol around the clock is helping or maybe the Suprax is finally starting to work on that ear infection. Whatever the reason, it's just good to see some smiles out of my girl again. She's very squirmy. Even on my lap, she's trying to roll. I know she'd prefer to be on the floor but with her nausea, that's just out of the question. Hopefully she has a better day tomorrow. She definitely deserves some good days. She wants to be a good girl!!! Please keep it in your prayers that we can all get healthy (tonight Mike is the one feeling awful)!!

Friday, November 4, 2011

Ear infection = miserable girl

Reagan has had another horrible day today. She was up nearly the entire night (and so was I), which probably didn't help her mood today. She was very fussy/moany all night and then this morning (and then again tonight) she was crying A LOT (and threw up). We did take her back in to the pediatrician and just as I had feared, her right ear that just had fluid in it on Monday has developed into a full blown ear infection. The other ear, which was clear on Monday, now has fluid in it as well. So we started her on a new antibiotic (Suprax) and hopefully that will help her to feel better in the next day or so. After our visit with the pediatrician, we had to take a very unhappy Reagan into the med center to have her first blood draw for the EPI-743 protocol. They had to check her venous blood gases (VBG), so we couldn't have it done at just any clinic, we had to actually take her to the hospital outpatient lab. Thankfully we had two women that knew what they were doing and they were able to get both the blood and the VBG in one stick (originally they thought they'd have to stick her twice). Despite her previously fussy attitude, she actually did great for the blood draw and was a good girl the rest of the afternoon. She did have two stinky, explosive diapers again today (very unlike her) I still wonder how much her tummy is playing into her mood as well. Right around the time the nurse left, she started up crying and didn't stop for an hour and a half. She's just so miserable...and I'm sure exhausted...but she hasn't really slept at all today. Hopefully she'll get some sleep tonight, Lord knows we both need it!!

Thursday, November 3, 2011

Pretty miserable

Reagan slept well again last night (thank goodness) and then woke around 9:45am this morning in a not so good mood. She's been pretty fussy/on edge all day. She'll laugh here and there, but she's doing more fussing/crying than laughing. She also had two very loose diapers, which for her is very unusual. Lately she's been so constipated I've actually had to help her go (I know...TMI), so I'm wondering if this change of pace means maybe she's dealing with some sort of stomach virus as well. She seems to be pretty miserable. Lots of moaning/whining. I've been having horrible sinus headaches, so I'm wondering if maybe she's experiencing something similar. We'll probably run her in to the pediatrician again tomorrow, just to make sure her ears haven't gotten worse. I'm not exactly sure what this upper respiratory junk is going around but it seems everyone we talk to has been dealing with it. Therapists, nurses, friends...EVERYONE. I'm so ready for her to start feeling better. It seems we went from her having hyperactive days (with no sleep), fussy/off days, a couple OK days, and then now bad days. What do we have to do to get some good days around here?!?!? She did take a nice little nap this afternoon but she woke in a horrible mood again. Tonight has been more of the same. Poor girl. Please keep her in your prayers...

Wednesday, November 2, 2011

Not a happy camper

Reagan slept well again last night. So well, she didn't want to wake up this morning (again). Her occupational therapist came at 11:15 and Reagan was still asleep, so I just let her stretch her. Around 11:30am, she finally woke up but she wasn't in the best mood. She was OK, but a little on edge. She was still pretty snotty and gurgly and then she started up crying and made it even worse. She calmed down for her speech therapist and then seemed OK for a while. She didn't start getting fussy again until tonight right as the nurse was leaving. She cried for a bit and then fell asleep on me. She was very restless so I just held her and then she woke back up an hour or so later and seemed to feel a little better. That lasted an hour or two and then the crankiness stated back up. I don't know if it's all our fault for waking her this morning or what. In hind sight, we probably shouldn't have woken her up (we won't make that mistake again). I don't know if she is just tired, feels sick, or is just having a "bad day" but she's not a happy camper, that's for sure. Please keep it in your prayers that she gets some sleep tonight and is a happier girl tomorrow.

Tuesday, November 1, 2011

Still a little off

Reagan finally slept well last night!! I don't remember hearing her at all during the night (of course none of us got to bed til well after midnight). Reagan slept in again this morning...that seems to be the trend of late. The last 30min or so before she woke up, she was very restless. She kept crying out like she was having a bad dream, we'd run in to console her, and then she'd settle down and continue sleeping. Poor thing. We were quite concerned that she was going to wake in a foul mood, but after the initial shock of waking up, she did give us a few smiles and seemed to cheer up. She wasn't in a great mood today, a little serious at times, but overall she was content. We even got the occasional laugh. She had lots of therapy though (OT, "school", and then PT) and she tolerated it well. She was looking a little tired tonight when Mike got home and she had a little meltdown. Grandma cheered her back up and she was fine. Speaking of Grandma, she had to head back home tonight. We'll definitely miss her. Today was actually Mike's a friend of ours from Bible study offered to come over and watch Reagan so we could go out to dinner. We were a little nervous because we didn't know how Reagan was going to do, but she behaved herself and we were able to have a very nice dinner out. She never fell asleep though and she did have another little meltdown for me before bed (crying and trying to bite herself). She's still a little sniffley (and so am I)...she's just not feeling quite herself. Hopefully she'll pull out of this soon and get back to her happy easy going self!