Monday, January 31, 2011

Traumatic finger injury

Today has been one heck of a day. It started off rough with Reagan up and down all night long. She'd fall asleep, I'd lay her down and she'd be back up 30min later. It was a looooong night (especially for my back). She was fussing and moaning a lot. Never a fun thing in the middle of the night. Then this morning I went to the grocery store and when I came back the first words out of our nurse's mouth was "Now don't freak out". I looked at Reagan sitting there between her legs and there was a blanket on her covered in spots of blood! Reagan had bit her finger...BIG time. She's just so quick! Her nurse was holding her arm but she pulled it away and it was in her mouth in a matter of seconds. I think the only thing preventing her from biting her finger off was the bone! She has a huge cut on the top of her left pointer finger and a huge cut on the bottom. The bottom part (the fleshy part of the finger) looks the worst. It's a wide, deep cut. The picture doesn't do it justice. Her finger is still really red and now she's got pieces of skin peeling off of it. It looks horrible. I called her pediatrician and she didn't seem to think we needed to come in (that is not unless we couldn't stop the bleeding). We had some heavy duty antibiotic cream to put on it and I ran out and bought $25 worth of band aids and gauze. Ever since this incident, we've kept her in her arm restraint all day. We have GOT to find something to put on her hand when she gets like this! I'm afraid next time she might lose a finger! Suprisingly enough taking a huge chunk out of her finger didn't even seem to bother her that much. She didn't even cry when she first did it. She's been all around fussy today, but she was that way yesterday too (before she bit her finger). She's still having lots of chorea (it feels like she's trying to kick loose of your hold at all times) and she's still pretty zoned out. I'm afraid I've got a long night of child wrestling ahead of me. Please keep her in your prayers!






We gave her a bath afterward (we bagged her hand to keep it dry) and she fell asleep before we could even get her dressed! (of course that only lasted a 10min or so)

Sunday, January 30, 2011

Moaning

Sleep last night was better than I would have guessed. Reagan went to bed early (for her) last night and then slept through til 4am. I heard her moving around, so I got up and put a sock over her hand to keep her from biting herself. She eventually went back to sleep because when I got up at 5am to take my mom to the airport she was back out. Then I came home and laid down and she was up again by 7. Mike got up with her and let me sleep in a little. I've been having killer lower back pain, thanks to 7 weeks of Insanity (the workout...not my mental state) and the constant lifting of a 35lb child. Reagan has been in a lovely mood today. We're talking nonstop moaning & whining! She's very tense and having lots of chorea. She's had this sad, pathetic look on her face all day. So far I'm not seeing any improvement in her bad days since adding the Neurontin. I just increased it to 3x a day today, so we'll have to see, but so far it's not looking very promising. I'm just hoping that she gets over these bad days by this weekend...we've got the Mitochondrial Foundation Walkathon on Saturday and I SO want her to be able to go and show everyone her cuteness! As of now, our team has raised just under $5000...which is amazing considering we haven't done any fund raising other than sending out emails. Next year I want to do it bigger and better. I want to have events in advance to quadruple what we raised this year! I want to spread awareness about this devastating disease. We've lost so many kids just in the last few months and there are others that are in bad shape but continue to fight for their lives. Please keep these kids in your prayers...specifically Cooper Knight (who's here in Houston), Eithene, and Kyle.

Saturday, January 29, 2011

Not so happy

Reagan woke up this morning around 6:30am in a not so happy mood. I put her in bed with me and she dozed off and on til 8:15am. She was very serious (quite the opposite of yesterday) and had a scowl on her face at all times. Big startled eyes. Lots of chorea in her arms...constantly trying to swipe at her face. Then around 10am she lost it and went from fussy to screaming crying. Grandma sat on the swing with her and got her to calm down and then she fell back to sleep. She took lots of cat naps today...but when she was awake...she was NOT happy. Not a lot we could do to make her happy...just wait for her to go back to sleep! One funny thing, when my mom was trying to fix her hair tonight she told her "Reagan, you need to be a good girl!" and she very clearly said "NO!". Then my mom said it again, and sure enough, Reagan said "NO!" again! Could be coincidence, but certainly the closest thing we've ever seen to her "talking" to us. Tonight she fell asleep on her own fairly early. She's been restless though, several times I thought for sure she was back awake because she was moving around so much, but each time she went back to sleep on her own. I've got the clonidine on standby again...hoping I don't have to use it.


Friday, January 28, 2011

Nonstop laughing

Reagan has been quite the turkey. It all started last night just before bedtime. I gave her the clonidine and she went a little coo coo. She was fussing and crying and yelling and flailing...and then she was OUT. I put her in bed and against my better judgment, I put the CPAP on her. She slept about an hour and 15min before waking back up. I had to take it off of her but she didn't go right back to sleep like the night before. I think she was up and down most of the night. Then this morning I went to the airport to pick up Grandma. By the time we got home, Reagan was up and laughing up a storm. She's been laughing nonstop all day long. She had OT and then speech first thing this morning. She did well for both. Then this afternoon she kept us entertained with the laughing. It was funny...but it was excessive. I can't imagine laughing nonstop an entire day! I'm sure it's all neurologic. I'm just wondering if it's anything to do with the neurontin. I guess we'll have to keep an eye on it. It's certainly not drugging her up at all. I'm guessing it's more likely relating to impending bad days. Today we noticed cold, clammy hands and feet as well as some trembling legs. She's also been very spitty today, making occasional gaggy faces, and putting her hands in her mouth nonstop. Tonight she's been very tense and manic. I'm not sure how on earth we'll ever get her to bed...but I'm hoping the clonidine will help. Please keep her in your prayers.
*update* Before I could even give her the clonidine, she fell asleep on Grandma's lap! At least I have the clonidine as a backup tonight, just in case she wakes up!

video
This is just a tiny excerpt of our day...imagine this nonstop...that was today.
(Don't forget to pause the blog music!)

Thursday, January 27, 2011

Swallow study and a precious girl

CPAP didn't go so well last night. I hooked Reagan up around 11:45 and by 12:40 she was rustling around, eyes open, so I had to take it off. Thankfully she went back to sleep fairly easily. Maybe she just wanted that giant gas mask off of her! I got up at 6am to shut her pump off (because she was having a swallow study at 9am) and she was still asleep. By the time I crawled back in bed I realized that her pump only needed to be off for 2hrs, not 3. So I got back up and hooked her back up. When I got up at 7am to shut if off again...she was already wide awake and smiling away. Super smiley. Super precious. And she's been precious all day long. We went in at 9am for her swallow study. It went very well. Reagan was great for the whole thing (very different from her first swallow study when she was little and screamed the entire time). They gave her applesauce consistency first. The first bite she just let sit in her mouth. Didn't move her jaws at all...like she had no clue what to do with it! Poor girl. Finally she got the hang of it and she swallowed it down, no problem. Next they tried a level 3 baby food that was thicker. She did well with that too. And then they tried the liquid. They gave it to her in a dropper (like we have used with her in the past)...except this time they put the dropper toward the back of her tongue and squirted it in. Needless to say, she did aspirate a tiny bit of it in the beginning. The next couple tries she did fine...I think she just wasn't ready for that consistency (or having it shoved to the back of her throat...I think I would have even aspirated that). The conclusion is that it's fine for us to proceed with purees. Not so much liquids. Not now anyway. That's fine. At least we can start giving her little tastes of things without worrying about her not being able to tolerate it. The whole appt was really quick. We got there at 9am, waited in the waiting room for at least 15min and then were completely finished and in the parking garage by 10am! That's record time at Texas Children's! Then we came home and Reagan had both OT and PT. During OT she did some tummy time (something we don't work on nearly enough) and during PT she spent some time in the walker but didnt' seem too happy about it. After PT she spent an hour in the stander playing with her ipad. She was so cute, I just had to take some pictures of her. Mike left this afternoon for a business trip in Mexico and since my mom couldn't come in a day early...our nurse said she'd be willing to stay the night with us! How sweet is that?!?! We're very lucky to have her. Tonight Reagan showed her appreciation by turning the cuteness up and was laughing up a storm. Beyond cute! We were all cracking up! Oh how I love it when my girl is happy!








We just couldn't get her to keep that tongue in her mouth today!

Wednesday, January 26, 2011

A few good hours with CPAP

I just want to say a quick thank you for everyone who leaves nice comments on the blog. It may seem like such a small gesture, but it really does mean a lot. Last night I put Reagan on CPAP around 11:30pm. She slept through til 5am and then was up. I took the CPAP off but just left her in her bed til 7am. She was content, but she never went back to sleep. Sometimes I wonder if she's sleeping less than she normally does with the CPAP on because she's getting better quality of sleep during that time. It's like...thanks, all I needed was a "good" 4-6hrs of sleep (that's the equivalent to a "not so good" 8hrs of sleep). I don't know. She sure seems to have a knack for only sleeping 4-6hrs at a time when she's wearing it. She's been in another good mood today. Lots of smiles, but still a little subdued (we could use some laughs maybe). She had vision therapy this morning and then her teacher came at noon. I'll tell you what, I'm so glad that I fought to get her a better teacher because I really love this lady! She's obviously been doing this for a very long time and yet she is so enthusiastic. She works on colors and shapes and does little art projects with Reagan...things that kids would actually be doing in the classroom! Finally, someone treating my child like a real kid! The rest of the day went by smoothly enough. We had a new nurse today (who will hopefully be working on Wednesdays) to try to take some of the load off of our other nurse. We seem to get a long pretty well, so hopefully she works out. Reagan has been a bit of a turkey today with her hands. She's constantly putting them in her mouth. Not biting them, but chewing on them. Putting them so far in her mouth, I don't know how she doesn't gag herself. We keep pulling them out and she keeps putting them back in. We put a blanket over her hand and she works to get the blanket off so she can get to her fingers! She's also been grabbing her pigtail. I guess that's when you know it's time for a haircut! I'll have to take a picture with it down...it's ridiculously long right now. She looks like Rapunzel! Grandma SO wants to get some pictures of her with her hair all curled up but I think she'll end up looking like one of those kids on Toddlers in Tiaras! I am excited because our photographer from last year has agreed to do another photo shoot for us! She took that picture at the top of the blog. I just loved how those pictures turned out. I can hardly wait to see how they turn out this year. We just need Reagan on one of her good days. Just to be safe, we set aside both a Monday and a Friday...just in case.

Tuesday, January 25, 2011

Still pretty groggy

Reagan fell asleep last night around 11pm. At about 12:30am, I hooked her up her feeding pump and put the CPAP on her (we were up late watching the Australian Open). Sometime around 4:30am I heard her so I got up and went in there. She was moving around and had her eyes open, so I took the CPAP off. I was checking to see if she had a wet diaper when I felt wetness around her. It was NOT her diaper...it was her tube! The medication port had popped open (who knows when...maybe since I hooked her up) and not only was her pump pumping out formula all over her bed, but her intestines were emptying out as well! What a mess. I felt HORRIBLE about it...although I'm still not sure if I just didn't check it or if she did it. We had to change her and I had to strip down the entire bed because it was soaked. We ended up putting her in bed with us and she snuggled up and fell back to sleep. She had a pretty good day today. She was a little more alert than yesterday, although she was still pretty groggy. There were times where she still didn't want to open her eyes. She had OT, PT, and "school" today. She was half asleep during most of OT. For PT she was a little more awake. Her therapist put her in her stander right before the teacher got here and then she stood for over an hour while her teacher worked with her. Tonight I had tennis (I won...for once) and Mike watched Reagan. She was a complete doll the whole time. When I got home I took her and she snuggled up on me and fell asleep. Such a sweetie! I love this girl! I started the neurontin tonight so we'll see how that goes. I'm going to give the CPAP another try tonight. Wish me luck!

Monday, January 24, 2011

Sleepy, snuggly

Reagan slept the whole night through last night. That's right...she slept from 10am yesterday til I woke her up this morning to take her to her appt. She did wake up but she was still very groggy and not wanting to really open her eyes...but smiling from ear to ear. By the time we got to the doctors office, she was already back asleep! Overall, I would say we had a great experience at the CHOSEN clinic (aka special needs clinic). I only wish we would have started off here years ago because they seem to be the only place that actually tells you about all of the services/programs available to special needs kids (instead of having to find it out from other parents). They were all very nice and I like the doctor a lot. He immediately came up with a plan to try to alleviate some of the unpleasant symptoms Reagan experiences during her "bad" days. Tomorrow we're going to start her on Neurontin (something we've thought about trying before, but just never did). It's used to treat neuropathic pain. Since all of her symptoms seem to be coming from a dysregulation of the autonomic nervous system...this is something that might help. It has to be built up in the system to work, so we'll have to give her on a daily basis. We're going to try it out (increasing it over several days) and then go back in two weeks to discuss whether or not it's helping. If she's still having issues, then we'll probably investigate some sort of pain medication like a fentanyl patch or methadone. Many of the issues she's having could be stemming from uncontrolled pain and since we've never really investigated these hard core pain meds...maybe they would actually help. Who knows. It's worth a try, that's for sure. Anything to give her some relief from those bad days! So that's the plan. Reagan was never really awake, awake during the appt. She just sat on my lap, crunched over at the waist, eyes half open, making a grunting noise. It was as if she was trying to nuzzle into my lap and go back to sleep...and as soon as we got back into the car, she did. We came home for a little while and then headed back in for her AFO appt. She was not happy at all about being stretched during the casting and she even cried out a little (which I don't remember her ever doing). Hopefully the AFOs don't come out at too harsh an angle for her to tolerate (you would have thought he'd ease off with her crying, but no). This time around we ordered the leopard print, so we'll have to see how they turn out. Reagan fell back to sleep in the car and then slept for a couple hours after we got back. So good to see her getting some rest. Hopefully she's able to sleep some tonight! I had hopes of putting the CPAP on her tonight, but she seems to be moving around a lot in her sleep right now, so I'm not sure if she'll tolerate having something on her face. We'll see.


Asleep in the doctor's office this morning.

Sunday, January 23, 2011

Up all night, sleep all day

This girl...what are we going to do with her. Last night she was awake the entire night. I don't think she dozed even a little bit. She was content to just lay in her bed, kicking and moving about, the whole night. I kept waking up and looking at the monitor and each time she was still wide awake and moving about. I got up with her at 8am and she was just as smiley and happy as can be! We're talking, smiling from ear to ear smiley. Her eyes were bright, she was one happy girl. A couple hours later I was holding her on my lap and I noticed she had gotten very still, I turned to look at her and she was fast asleep. She fell asleep sometime after 10am and has been asleep all day long. It's funny, because before she fell asleep I was really worried about her still not sleeping. After staying up and getting no sleep for so many consecutive days, her body really needs that long sleep to recuperate. I was beginning to wonder if maybe she had skipped over that and that it wasn't going to happen after all. Thank goodness I was wrong. I've noticed her moving around here and there tonight, but so far she's hasn't woken up. Good thing she's resting because tomorrow we've got a busy day. We've got an 8:30am appt with a "special needs" pediatrician. I spoke with the nurse on Friday and she said the appt could take as long as 3hrs! I said that's fine, as long as we're not sitting in the waiting room for 3hrs!!! Then at 2pm she's got her appt to get new AFOs. That means casting...so hopefully she wakes up in a good mood! Thank you for your prayers! Good days are so close I can smell them!

Saturday, January 22, 2011

Crazy laughs

Today has been an interesting day for our little one. Last night sleep was just not happening (again). I left her in her bed from 12-2 but then I heard her moving around a lot and making some sort of coughing/choking noises so I decided to sit up with her. Turns out it wasn't coughing or choking, it was grunting. I've heard of kids with mito doing this...it has something to do with breathing issues and possibly low O2 sats. I'm not really sure why Reagan was doing it. We did have her left arm weighted down with a weighted blanket...so maybe she was just struggling because of it. I don't know. But it did take 20-30min or so after I picked her up for her to stop doing it. I sat up with her from 2-5:30am...it's nice that the Australian Open is going on right now...it gives us something to watch on TV in the wee hours of the morning. I put her back in her bed from 5:30-8am, but I don't think she ever went back to sleep. When I got up with her at 8am I noticed something different. She was spunky. She had a little smile on her face. She was vocalizing and laughing (her crazy laugh). She was interacting with us. Things are definitely still "off". She's still not sleeping. She continues to try to get that hand to her mouth, but doesn't appear to be trying to bite it (although we're keeping it covered just in case). She's still a little tense and moving around a lot (and trying to rub her face with her arms). But she's LAUGHING! And she's SMILING! Yes, they're crazy laughs and smiles, but I'll take them! It makes me think that the real good days are just around the corner! Oh how I can't wait for those good days (and sleep filled nights). Thank you for continuing to keep her in your prayers!

Friday, January 21, 2011

Where are the good days?

Last night Reagan "went to bed" around midnight. She was asleep for maybe 5min or so after Mike laid her down and then she was moving around again. We decided to just let her lay there and to my surprise she went back to sleep. She was asleep, awake...asleep, awake...asleep, awake. But at least she was getting more sleep than when I stay up with her. Finally around 5am she really started rustling around, swatting at her face, so that's when I finally got up with her. She was wide awake from then on. Something new we've noticed...now she's putting her right hand in her mouth as well. We restrain her left hand (which by the way has a huge gash on it from her biting it yesterday) and now she's putting the fingers from her right hand down her throat. She gagged a few times this morning because of it. I also noticed she was a little burpy today. I don't know if it's reflux related or what. She's still very stressed, tense, shaky, easily startled and zoned out. She had speech therapy this morning and actually tolerated the oral motor stuff pretty well. This afternoon she had OT. Her head control is great (because she's so tense) but she was so zoned out, it was hard for her therapist to get her to interact with her. During OT she also got nauseous all of a sudden and had two really big, foamy throw-ups. The first left her very gurgly in her throat and the second you could hear it in her nose. Poor girl. Throwing up is SO not fun. The only good thing about her throwing up is maybe we are nearing the end of her bad days. We are definitely ready for some good days. She deserves some good days. Thank you for continuing to keep her in your prayers!

Thursday, January 20, 2011

Still off

Things are still off over here. Reagan was up most of the night, but she did sleep for short periods here and there (better than nothing). She's still very tense, having lots of chorea (random arm/leg/head movements), and overall she's just very serious. She had a day full of therapy and since she was awake (and not crying), we went ahead and let everyone come. At 11am her new speech therapist came. No oral motor stuff today, but at least she got to "meet" Reagan, even though she's not her usual self. At 12:30 her OT came. Not sure what they worked on...I had to run to the allergist for my allergy shots. At 2pm she had PT. They worked on their usual things and then she ended with Reagan in her AFOs and put her in her stander. Amazingly she tolerated it well and stayed in it from 2:45-4pm. Her teacher and school speech therapist came from 3-4 and worked with her while she was in the stander. Reagan continued to be zoned out, but at least she had some different people interacting with her. She probably gets sick of us on days like this...being held 24/7...all of the therapy was probably a good distraction for her. I did manage to reschedule her swallow study, tomorrow just wasn't going to be a good day for that sort of thing. They had a cancellation for next Thursday morning, so hopefully things will be better by then! They also brought out a new CPAP today, so once she actually starts sleeping again, we have no excuse not to use it! So that's about it for today. Not a horrendous day...but definitely not a good one. I'm ready to have my sweet, happy girl back. Please keep it in your prayers that she's back to happy (sleeping) self soon!

You can just tell she isn't feeling well (notice the weighted blanket over her arm).

Wednesday, January 19, 2011

Bad days?

So...last night was about what I expected. Reagan was up and down the entire night. She'd fall asleep, sleep an hour or so, wake up crying and then I'd pick her up and we'd sit up for an hour or so. Over and over and over. Unfortunately she didn't fall asleep til 11:30pm, so that didn't make for a whole lot of sleeping hours. While we're on the topic of sleep...NO I've been horrible about using the CPAP lately. The tubing was completely broken open (I thought it was making more of a whooshing noise than usual), so we went days before they ever got back to me and then days before they sent out the new tubing. Our machine is also making some weird noises. Electrical interference sort of noises. First we just heard them over the baby monitor, so we thought maybe it was just the monitor. But then we noticed it was coming from her room...when the CPAP wasn't even running. When I unplugged it from the wall, it stopped. I spoke to the company today and they said it shouldn't be doing that and they are going to get us a new one. So that's the news on the CPAP front. Today Reagan has been very tense...more chorea, trying to bite her hand (and succeeding once). She's definitely stressed. Not even an inkling of a smile and quite a few "stink eyes". She's also had a few dirty diapers and a huge increase in wet diapers. Not sure what's going on with her, but it does look like a fairly typical first couple of "bad" days. Problem is, she's scheduled for her swallow study on Friday. If she follows her typical pattern, she could be nauseous by then, in which case we'll definitely have to reschedule. This is certainly not an ideal time for her to have this procedure, but I have no idea how many weeks away we'd have to reschedule it (in which case, she could still be having bad days by that time). I guess we'll just have to wait and see. Today Reagan had both vision therapy and an hour of "school". She fell asleep toward the end of vision and got fussy toward the end of "school", but she did better than I would have guessed and it did provide some distraction for her. I'm hoping she'll be able to get some sleep tonight, but I'm not counting on it (she's got those wild, big eyes as of now). It may be another all nighter for both of us. Please keep her in your prayers!
**And keep our little friend Jackson in your prayers. He goes in tomorrow morning for another, yes another, brain surgery! He and his family need lots of prayers!**

Tuesday, January 18, 2011

What's wrong with my girl?

It's amazing what a difference a day can make. Today has been a complete polar opposite of yesterday. On a good note (the only good note), Reagan slept through the night last night. She slept hard. Lately I've noticed when she falls asleep she's very twitchy...her arms and legs will still be twitching here and there...she just doesn't seem to be sleeping soundly. Last night she slept soundly. But this morning, when she woke up at 8:10, she woke with a vengeance! She was screaming, crying. We're talking red face, terrified eyes, thrashing about...something was (and is) definitely bothering her! She dozed on and off throughout the day (thank goodness), which is very unusual for her, but when she was awake she was crying. We took her in to her 1pm appt with Dermatology to get the "acid" put on her spots of alopecia and thankfully she slept most of the time. While we were there we headed over to the pediatrician's office just to get her checked out. Ears look fine (darn), throat is fine, no fever...not much else to say. Then we came home and she took a big poop! It was definitely thicker than her usual liquidy consistency...so maybe that's part of the problem. Tummy pains? I don't know. It's just so miserable that she can't tell us what's bothering her. Whatever it is, it's serious. She is really super miserable. She also seems to be crying when she pees. Right now it's hard to tell if it's the chicken or the egg because she's crying so much. If she wakes up tomorrow just as fussy, we may take her in to get cathed and have her urine checked out. She has been "holding" it for days now, so maybe she's got a UTI? I don't know. Who knows? We're all just clueless. We want to help her, but we have NO clue what's bothering her. Tonight Reagan had another poopy diaper, right before I left for tennis. Maybe that is what's bothering her!?!? She was actually pretty civil while I was gone...Mike said she didn't cry much but she had a scowl on her face the whole time. I got home around 9:20pm and she had already fallen asleep. Let's just hope she stays that way! We all need to recover from this day! Please keep her in your prayers!

Monday, January 17, 2011

Vocal

Today has been a really great day for little Miss Reagan. She slept fairly well...I woke up at 6:15 to her "talking" in her bed. I'm not sure if she had been up longer or not, but she didn't go back to sleep! We left her in her bed for another hour or so and then Mike picked her up and swore she was saying DA! She's been in a super great mood all day today. Head control has been great and she's been laughing and vocalizing a lot...it's one of those days I wished she would have had therapy because I know she would have done awesome! She was activating toys and picking her head up when her nurse told her...I was VERY impressed! No therapy on Mondays though, so she spent most of the day entertaining our nurse. I took some video of her being cute this afternoon. I heard her from the other room, so I grabbed the flip video camera I got for Christmas and put it to use. Unfortunately when I tried to put the video onto my computer...it kept giving me an error message and I wasn't able to get it to download onto blogger either! Hopefully we'll figure this out and get it posted so everyone can see it! Right before bed we did have a little mishap. Reagan has been only having 2 wet diapers a day and this has been going on for several days. So I decided to give her lasix to try to get her back on track. I gave it to her around 9:30 and an hour later she finally had a big wet diaper. I gave her clonidine around 11pm because she was still wide awake and very vocal and then around 11:20, just as she started getting sleepy, she started freaking out. She was frantic, she started crying and slapping me in the face with her arms. I didn't know what the heck was wrong with her. Then she had another big, huge wet diaper. Maybe peeing is hurting her, I don't know. I immediately got up and went to lay her on the floor to change her, but the pee started coming out of the top back part of her diaper and was pouring onto the floor like a waterfall!!! I was screaming at Mike to get a towel and he was just standing there. It was a MESS. Pee everywhere, I was screaming, Mike was screaming, Reagan was screaming. After I finally got her changed, I handed her over to Mike so I could clean up the mess and she immediately fell asleep on his shoulder. Talk about a weird ending to a wonderful day.

Sunday, January 16, 2011

Prayers for a good week

Reagan fell asleep last night again without the help of clonidine. Unfortunately, sleep did not last too long. I woke up around 4:45 and found her moving around in her bed, playing with her hands. She wasn't fussy at all, so I just left her there, hoping she'd fall back to sleep. I must have been really tired because I woke up and it was after 9 (I can't even remember the last time I slept til 9) and there was Reagan still wide awake, laying in her bed. Tonight we will be using clonidine. Hopefully she'll get a good night's rest with it's help. Even though she missed out on some sleep last night, you'd never guess it. She was moving around and chewing on her hands all day long and never dozed once! She's been in another great mood, smiling all day (except for a fat lip for Daddy this morning). Her hands and feet have been very sweaty today...not ice cold and clammy like when she's not feeling well...just clammy. She's also been sticking her tongue out a lot, almost biting or chewing on it. Not sure why she does this, but she did it a lot today. I'm still hoping for a good week next week...please keep that in your prayers!

Saturday, January 15, 2011

Loving these good days

Reagan had another good night's sleep last night. She went to bed (without clonidine) and then slept through til 6:45am this morning. She woke just as smiley and cute as can be! She's been a complete angel all day today. Smiling nonstop! I love it! It's been a really good day for her. She played with Grandma a lot and she's still babbling here and there...it's beyond cute. Loving these good days!





Friday, January 14, 2011

All smiles

Sleep last night wasn't exactly what we had hoped for. I woke up at 3am to little miss sunshine "talking" to herself in her bed. She carried on for quite sometime, so finally I thought maybe I could get her back to sleep if I picked her up. We sat up just for a little bit, but she was NOT getting sleepy. She did have a good wet diaper, so I changed her and then put her back in her bed. An hour or so later, I woke up and checked the monitor and she was back asleep. I think she woke up another time or two before finally getting up for the day. Not exactly a great night's sleep but we'll take what we can get at this point. Today she's been super sweet and smiley all day! Grandma flew in this morning and boy has she gotten her share of smiles! Grandma had her riding "Rody" (her inflatable horse) and she was LOVING it! Only one therapy today...OT. Her head control today has been pretty good, so that helped her to do well during therapy. This afternoon she took a couple hour long nap...I guess she was probably a little tired from being up part of last night. Then tonight she hung out with Daddy while Grandma and I attended a graduation party for the little twin girls that were the flower girls in my wedding. Now they are not so little and have turned into gorgeous young women...boy do I feel old! Reagan was a doll for Daddy all night and when we got home she was fast asleep on his lap. Overall, it was a great day. Reagan was precious and as sweet as can be! I promise to take some pictures tomorrow...I can't believe we didn't get pics of those smiles today. Prayers for a good night's rest for all of us tonight!

Thursday, January 13, 2011

She's back!

Sleep...oh glorious sleep! I had forgotten how nice it was to sleep in my bed (instead of just napping in it). Last night Mike stayed up with Reagan from 10-12...as I was preparing for another all nighter with Miss Reagan. She was asleep, so he laid her down in her bed at midnight and by the time he laid down, she was already awake! I was about to get up with her when he told me to just leave her. She wasn't crying and she was no longer trying to bite her hand, so I figured I'd just let her lay there til she started fussing, and then I'd get up with her. Well, I kept checking on her throughout the night, and at first she was awake/asleep a lot. I'd look at the monitor and she'd be moving around, I'd look again and she'd be asleep. Finally toward the tail end of the night, it seemed she was always asleep. So yeah!!!! My girl FINALLY got some sleep (and so did we)!! She slept in until just before 10 and she woke with tons of SMILES!! Let me tell you, I was a happy camper! I've been waiting for those smiles for what seems like forever...and today they were finally back! She was still groggy and even though she was smiling, she was reluctant to open her eyes. She stayed awake for only two hours and was out cold again by noon (just in time to miss all of her therapies). We decided sleep was far more important than therapies today! She woke around 4pm and she was not too happy. She was grunting a lot and her face was bright red. She fell back to sleep but woke upset again a little later. I'm not sure what was bothering her. She did have some gas but she was also having some issues with urine retention. She went all night and all day without a wet diaper, so finally we gave her some lasix and she had two wet ones back to back. I guess some things are still off for our little one. She fell back to sleep after the second diaper and when she woke again, the smiles were back! She was smiley and quite vocal the rest of the night. Such a cutie. I love those smiles! Hopefully she's down for the night and we all get another great night's sleep tonight!

Wednesday, January 12, 2011

Insomniac

Last night was another long one with our little insomniac. Mike watched her from 10pm-1:45am and let me sleep. Funny thing is, Reagan dozed off and on for most of that time on his lap (with the help of clonidine). When I got up at 1:45am, he attempted to lay her down in her bed...but she was back up by 2am. So I got up with her and she never made another attempt at sleep again. She was wide awake with big giant eyes the rest of the night. She was having these outbursts where she'd just yell out all of a sudden in a scared sort of way...not a fan of those. But overall she was content, quiet, and serious most of the day. She had both vision therapy and "school" today and she did really well for both, all things considered. She wasn't super responsive during vision...but who can blame her. Those eyes are tired! She didn't even make an attempt at a nap, but that doesn't really surprise me. Chorea has really eased up and she's been pretty still and thankfully she's even stopped trying to bite her hand! Tonight she had two really big throw-ups (the kind that come out the nose). Again, they didn't really seem to be associated with nausea...the just came out of no where. She was super spitty and I think she just choked on it. She was very spitty most of the day today, dripping kind of like a leaky faucet. I don't know if she gets that way because she's nauseous, or if it's just something else altogether. I'm still hoping and praying that we're almost done with this streak of bad days. It seems never ending. Please keep her in your prayers for not only sleep but smiles and good days, sooner rather than later!!

Tuesday, January 11, 2011

No sleep, no smiles

Last night was another all nighter for Reagan and me. She fell asleep around 11:30pm and as I laid down in my bed at midnight I looked at the monitor and she was already awake. I didn't have the option of just leaving her there in her bed, because she was constantly trying to bite her hand. I tried to put the arm restraint on her but that made her start fussing...so I just gave up and picked her up and we were pretty much up for the night! She fell asleep once for about 30min and then that was it...the rest of the night she was wide eyed and moving around nonstop. Thankfully she was quiet and not fussing, and while I love our quiet time together, I could have used some sleep! I tried to get a few hours today but it always seems the second I lay down, the phone starts ringing. Even though she was going on NO sleep...Reagan was pretty good today. No smiles, she was just very serious and quiet (but I'll take that over crying or moaning any day). She's still very clammy and shaky but her chorea has been a little less today. I went ahead and let both OT and PT come and she actually did quite well...considering. She went from having only a 1-2 diapers a day a few days ago to having 12+ a day yesterday and today. Her little body is just all out of whack right now. She's been a little spitty and she did throw up once, but I think that was because she was laying on her back and she choked on her spit (I wouldn't really say she was gaggy at all today). I'm still not sure what to expect over the next few days but I sure hope it involves some sleep for all of us. Please keep our girl in your prayers...we need some smiles again!

Monday, January 10, 2011

Rallying for Reagan

Reagan slept til 3:45am and then was pretty much up for the rest of the night. I sat up with her and she'd fall asleep for 10min or so and then she'd pop back up with wide eyes and moving about...this happened a few times until she was completely awake. The whole time I was up with her she was very fussy. It wasn't until around 9am or so that she finally stopped the moaning and whining and then she was pretty quiet all day. That is, unless she was having her diaper changed. She did NOT want to be put down today. As long as you were holding her, she was OK. Don't get me wrong, she was still extremely tense and zoned out...no smiles in sight. She was also having tons of chorea. Constantly trying to bite that hand. Definitely not a good day. I'm just hoping we're nearing the end of this bad streak. It's been a long one. We could all use some happy days and sleep filled nights! Definitely keep that in your prayers!

This weekend I saw yet another post about a child that has passed away from mitochondrial disease at 4yrs old. So sad and so scary. You just never know what to expect with this disease. You're never "safe". It's terrifying. That being said, I wanted to remind everyone once again about the United Mitochondrial Foundation Walkathon coming up the first Saturday in February. This is our chance to raise awareness and funds to try to put an end to this devastating disease. Just click on this link (or the link under Reagan's button) and it will take you to the team page of Rallying for Reagan and click on the yellow box that says Join Team. If you live out of town or are unable to participate, please think about making a donation...you can either register as a "virtual walker" or you can sponsor a walker that has already registered.

Sunday, January 9, 2011

Moany groany

Reagan's still giving us trouble. Last night she was very restless. She woke up a couple of times and was very fussy. She did have two dirty diapers this morning, so maybe tummy pains really are at the bottom of all of this. She's been super fussy today (and took NO naps). Lots of moaning and groaning. It's like fingernails on a chalk board. Very irritating. I know she's miserable and something is bothering her, but I seriously thought about running away a few times today. She's having lots of chorea and trying to bite her hand nonstop. You hold her as tight as you can and she still somehow gets her hand loose and back up to her mouth. She's succeeded in biting it a few times and then cried her breath away until she turned purple. She's still very clammy so I'm afraid to put her glove on her because her poor little hand is still healing from all of the peeling skin. She's also been licking and smacking her lips a lot (not in a seizure sort of way) but thankfully she hasn't really been gaggy at all. I have no clue what to expect in the days to come. She's not following her normal pattern, so I'm at a loss. I'd like to think that she'll sleep through the night tonight and wake up a happy girl. Please keep her in your prayers!! She could really use some good days!

Saturday, January 8, 2011

Irritable but sleeping

Reagan has decided to change things up a bit. Only two days into her bad cycle...and last night she slept the whole night through (without clonidine)! It was awesome! She woke up this morning at 6am very fussy, but immediately fell back to sleep the second I picked her up. And that was what happened the entire day. She'd wake up, cry a lot, and then pass back out. She spent way more time asleep than awake today. And when she was awake...she was a terror. Very tense. Very fussy. Lots of crying (the mad sort of crying)...but usually no tears. She did have a dirty diaper, so that may have been responsible for some of it, but probably not all of it. I have no clue what's going on. This is not at all her usual pattern. She's sleeping but she doesn't seem to be feel better...she seems to be feeling much worse! I just don't know with this girl. I'm glad that she's finally sleeping, I'm sure that little worn out body of hers really needs it...I just wish she were feeling better. I hate to see her miserable. Please keep her in your prayers. We want our sweet, happy girl back!

Friday, January 7, 2011

Sleepless nights

Last night was yet another all nighter with Miss Reagan. She fell asleep on her own around 10:20pm but was back up before midnight. We tried laying in her bed with her, in hopes that she'd go back to sleep, but it never happened. She started fussing, so I picked her up and she and I sat up all night again. This is exhausting. I used to complain about how tiring it was to get up and down, up and down all night long with her...but never laying down...that's a different ballgame! Thankfully she was in good spirits all night (as long as I was sitting up with her) and she just laid on me smiling away. She's definitely changing things up a bit. Usually the beginning of her bad streak starts with 1-2 days of nonstop screaming crying and little to no sleep. For some reason she's been exceptionally happy this go round (which believe me, I'm not complaining about). She's also usually having chorea by now...but I haven't really seen much of that. She has been slightly gaggy today, making a few gaggy faces and retching a few times. And I've also noticed some teeth gnashing although she hasn't really tried to bite her hand yet. That's a good thing because we've been trying to keep her hand glove free. We noticed yesterday that the skin on the tips of her fingers is peeling away because of her hand being in that spitty glove. Poor thing. She's also been hypersensitive. Anything, even your regular speaking voice or just your breath on her face can cause her to startle. She was a little "twitchy" and easily startled tonight when she fell asleep around 8:30pm...but when Mike finally put her in bed at 9pm, she was out cold. I'm going to hold off on giving her clonidine until she wakes back up. That way maybe we can get her back to sleep and extend her sleeping time a little. I would sure love it if she could at least get a couple hours of sleep tonight. I'm running on empty, so I know she must be completely and totally wiped! Time for me to try to get a few hours of shut eye. Please continue to keep Reagan in your prayers.

Thursday, January 6, 2011

Up all night...again

Reagan really threw up for a loop last night. I put her to bed around 11pm (with CPAP on) and we headed to bed sometime around 11:30pm. And then Reagan woke up at midnight! I was in disbelief! Not only was she awake...but she was WIDE awake (and fussy). I got up with her and we spent the remainder of the night in the living room watching late night tv. Reagan never dozed off even once (I wish I could say the same for me). She started off very fussy...kicking and screaming like crazy. The only thing I can think of is that her tummy must have been hurting (6 days w/out pooping). But what's funny is that she'd be kicking and screaming one second and then calm and smiling away the next! Very strange. Around 4am the mood swings stopped and she was all smiles. I really started getting tired around 5-6am...I was counting the hours til the nurse arrived. She had fortuitously decided to come 30min early (to try to miss traffic), so when she got here at 7:30am, I was waiting and ready to hand off my little trouble maker. I took two naps today (each about 1.5hrs) but I still feel completely and totally exhausted. Reagan, on the other hand, didn't seem any worse for wear. She had three therapies today all back to back to back. At 1pm she had OT, then at 2pm she had PT, and at 3pm her teacher and the school speech therapist came. Talk about a jam packed schedule! She actually did surprisingly well for all of them and then took a small 20min nap afterward. Reagan is still pretty clammy (last night she was sweating her shirt wet), a little shaky, hyper alert, and this morning she had two small throw ups (but overall she doesn't seem to be nauseous). It does appear that we might be headed toward the string of "bad days" we wanted to avoid. I just hope that this round of "bad days" will be more mild than the last. Lately it seems that we aren't getting enough "good days" to fully recover before the "bad days" start back up again! Please say some extra prayers for my super smiley, sleep deprived little one tonight! It's time for me to go to bed and try to get a few hours before it's my turn!

Wednesday, January 5, 2011

Pouty to Smiley

Reagan went to bed last night at 11pm and woke up early this morning at 5am...another 6hrs on the CPAP. I could have used a little more sleep, but Reagan was not having it. She woke a little fussy this morning. I figured it was her tummy, as it's going on a week since her last dirty diaper. I started the lactulose early this morning in hopes that we could get her to go today...but no such luck. Reagan's mood did improve...that is until Daddy woke up and tried to talk to her. Immediately she assumed the pouty face and stuck that bottom lip out and the tears started to flow. She did that once more when the nurse got here and then she was fine the rest of the day (that is, until Daddy got home from work). She's really giving her Daddy a hard time. She eventually warmed up to him tonight and resumed her smiley disposition. She's been smiley and happy again all day. She had both vision therapy and her teacher come and she did really well with both. Our only concern...she seems to be having trouble regulating her temperature (not uncommon with mito). Last night Mike noticed that she had clammy hands and today she's been super clammy/sweaty all over. She's sweating through her pants so much that her nurse thought she peed through her diaper several times today. Nope...just sweat. Very strange. We're just hoping that this is not a sign of bad days to come. You sure wouldn't think so with all of the smiles we've been getting. Please keep it in your prayers that she continues with the good days (and sleeping through the night)...that would be much appreciated!


We were trying to get a pic of the pouty lip but Reagan decided she finally liked Daddy!

Wrapped around Mommy's arm...



The camera light was in her eyes (we couldn't figure out how to turn it off)!



The hand that's always in her mouth!

Tuesday, January 4, 2011

Loving the sleep

Reagan was still really sleepy last night and fell asleep again right around 7:15pm (that's super early for her). I didn't put her in bed til around 10 because I kept thinking she was going to wake back up! I hooked her up to CPAP at 10:30pm and she made it til 4:15am with the CPAP on. I heard her moving around at 4:15, so I went in there and she had dislodged the mask a little and the air was leaking out onto her forehead. When I tried to readjust it, she started moving around, so I just took it off. At least she made it ~6hrs with it on! Thankfully she did go back to sleep and slept til 8:15am. I'm so happy that she's finally getting some sleep. That little body of hers sure needs it! Today she had both OT and PT. She did very well for both. During PT she spent some time in a walker (not walking, more like standing) but her head control was really good (that is until she got tired). Afterward, we put her in her stander and she stayed in that for almost an hour. Those little feet of hers were a little red when we finally took her AFOs off. We're taking her in Friday to get casted for a new pair. Now...we just have to put them on her more often! She was still a little groggy today and took a catnap here and there but overall she was more alert than yesterday. Hopefully she has another great night's sleep tonight. We all need to catch up on our sleep!

Monday, January 3, 2011

CPAP success (last night, anyway)

Last night was a great sleep night! Not only did Reagan sleep from 7pm-6:15am...she slept 10hrs with the CPAP on!!! She did stir occasionally, but she was just moving her arms around (never dislodging her mask) and she never even opened her eyes. I had to get up at 5am to take my mom to the airport and when I got back I found little Miss Reagan moving around in her bed with eyes half open. I took the CPAP off her and picked her up and she was awake. I tried to get her to lay in bed with us, but she was just squirming all over the place so I finally decided to just get up. She did take a couple naps today...wish I could have gotten a nap! This afternoon we headed into the medical center to get an echo. It was something the movement doctor had recommended months ago and I just never remembered to schedule it. Since Reagan had so many recurrent strep infections last year, they want to keep a close eye on her heart to make sure she doesn't have any heart issues associated with rheumatic fever. We waited over an hour in the waiting room and then the whole procedure hardly took 30min! The technician told me that everything looked good (I know they aren't supposed to say anything, but I appreciate the reassurance). Reagan was a doll the whole time. I had to hold her arms because she kept grabbing onto the cord but she just laid there staring up at the screen, smiling away. She fell back to sleep on the way home. Overall, she's definitely been a little groggy today. I guess she's still trying to catch up on all of those missed night's of sleep. She's also been very spitty today, choking on her spit at times, but not at all "gaggy". It's so nice to see her smiling again! LOVE these good days (and nights)!! Thank you everyone for the prayers!

Sunday, January 2, 2011

Sleep is good

Reagan finally slept last night!!!!!!!!! Hallelujah! I kept waking up throughout the night, only to find her still laying there fast asleep. I didn't think she'd end up sleeping too late though because I kept seeing her move around, she didn't seem to be in that deep of a sleep. But sure enough she slept in til 5pm this afternoon! And that was with Mike continuously going in trying to wake her up! Finally at 5 she was moving around so he decided to just pick her up. She was still very groggy and for a while she was just barely opening her eyes...but she was smiling!!!! And big smiles at that! Oh what a relief...to finally see her smiling again. It was wonderful. She only stayed awake for two hours or so before she crashed again. She was sleeping so soundly that I even decided to give it another go with the CPAP. I put it on her at 8:05pm...so let's see if we make it more than 45min this go round!

Now that the holidays are over, I just wanted to remind everyone once again about the United Mitochondrial Foundation Walkathon coming up the first Saturday in February. Just click on this link (or the link under Reagan's button) and it will take you to the team page of Rallying for Reagan and click on the yellow box that says Join Team. If you live out of town or are unable to participate, please think about making a donation...you can either register as a "virtual walker" or you can sponsor a walker that has already registered. Mitochondrial research is ridiculously underfunded and if we want to save innocent children like Reagan, we desperately need to increase awareness and funding for this devastating disease.

The most beautiful sight I've ever seen...

Saturday, January 1, 2011

Sleep deprivation to the max

We really thought last night was the night. Reagan fell asleep without the help of clonidine around 9:30pm...but the second we picked her up to put her in bed, she woke back up. She finally fell back to sleep at 11:30pm (an hour after her dose of clonidine) and she appeared to be out. We laid in bed thinking...FINALLY we were all going to get a good night's sleep! Then at 1:30am I woke up and saw her moving around in her bed (all covers kicked off)...she had apparently been awake for a while. I went in and covered her up and then I laid back down hoping she'd go back to sleep...no such luck. I went and picked her up and we sat in the living room from 2:45am-6:15am. She was very nauseous...something I was hoping we were through with. Her hands and feet were ice cold but she was sweating so much her shirt and hair were damp. She was also gnashing her teeth. It was another emotional night for me. I just can't stand watching her suffer like this and at times it seems never ending. At 6:15am I put her in our bed and laid her beside her Daddy. She never went back to sleep and we didn't really either. On a good note, her fever is finally gone. Today she has been fairly content, despite the nonstop retching. It's hard to tell if it's her sore throat that making her retch or if it's just the regular bout of nausea she gets. She's sticking her tongue out a lot and she's very spitty (and seems to be choking on it). Despite the lack of sleep, she hasn't dozed off even once today. It wasn't until tonight, around 9:15pm, when I was holding her that she finally started getting sleepy (without medicine). She'd go from big huge wide eyes to shut eyes over and over again. Please keep it in your prayers that she'll finally sleep tonight! She hasn't slept since Monday night, so that little body of hers needs some rest big time!