Tuesday, January 31, 2012

Still way off

I'm glad we had a nurse last night because little miss Reagan never even made it to her bed! Well, she made it to her bed, but not asleep! She was very restless last night. She slept in her chair and kept waking up off and on all night (thankfully the nurse was here to watch her so we were able to get some sleep). She woke for good around 5:45am. No smiles. Still very serious and very cold and clammy. She's also still having lots of chorea episodes...where she'll yell out and move her legs/arms nonstop, like she's running in place. I don't like this. It's been going on way too long. In certain terms, this bad streak hasn't been that terrible. Reagan only had one day where she was miserable and crying. On the other hand, these off/bad days have lasted way too long and the lack of sleep and amount of chorea has been horrible. It's beginning to feel like it's never going to end. The laughing last night made me hopeful that today was going to be a better day...but I was wrong. It's just been the same. She's still way off. Please keep it in your prayers that she's able to finally get some sleep tonight and that tomorrow is a better day. She really needs some relief from this! (Oh and by the way...we don't have a nurse for tomorrow. Go figure. I'm so sick of our nursing company!)

Monday, January 30, 2012

Turning a corner?

Reagan was up a lot again last night. She woke me up around 2am (and I noticed she had already gotten her arm restraint off). Mike laid down with her and managed to get her back to sleep but that only lasted til around 4am. I woke up and she was moving and thrashing around in her bed but she was still quiet, so I was hopeful she might go back to sleep. She didn't though, so just before 5am I decided to get up with her. I put her in her chair and covered her up with her weighted blanket and she was back out by 5:30am. I walked into my room and laid down in bed and literally the second I put my head on the pillow, I could hear her over the monitor moving around. So I got back up with her and we've been up ever since! She was still very serious and tense most of the day. We're still having to keep her arm restraint on because in the short amount of time she had it off today, she bit herself (not bad, but she still broke the skin). Overall, she's having less nonstop chorea but she's still having the short bursts of chorea where she can't stop moving. This morning she was laying on the floor and had a huge throw up. It came out of no where and it was mainly yellow bile. Poor thing! Other than that, she's had a pretty uneventful day. Tonight she seemed to have turned a corner. She was laughing (a little crazy but still laughing) and her hands and feet were finally normal temps for the first time in days. She fought sleep hard...even though she was up most of the night and didn't take any naps today! I'm not sure if she'll actually sleep tonight but we do have a night nurse for the first time in months, so at least we'll get some sleep! Thank you for your prayers for our little one. I think we're finally on the upswing of things!

Sunday, January 29, 2012

Still stressed

Reagan got a good 8hrs of sleep last night. She fell asleep early around 9:30pm and then slept through til 5:30am! I, on the other hand, didn't get to bed til right around midnight and then I woke every two hours because I'm so uncomfortable! At least one of us got some sleep! I got up with her at 5:30am and she was wide awake. She hasn't been fussy at all but she's still having a lot of dysautonomic symptoms. Her hands and feet are ice cold (but her body gets hot & sweaty), she's having crazy amounts of chorea (including the bursts of chorea where she runs in place and can't hold still), I haven't checked her heart rate but it's obvious it's elevated, and she's still very zoned out, tense, and stressed. When you hold her, it's hard to get her to relax. She's usually too tense to hold. Even tonight, she's tired and will eventually fall asleep in your arms, but when you try to move her she wakes up and is wide eyed and stressed again! Hopefully she's able to get some sleep. Hopefully we all get some sleep tonight. I'm praying for a good week for my sweet girl. She deserves it!

Saturday, January 28, 2012

Still tense but at least she's sleeping

Reagan finally slept last night. Part of the night in her bed and part of the night in her chair. But at least she slept. I sat up with her for a while in between, but she was a sweet girl and sometimes it's nice to have that one on one time with her to just snuggle (when I'm not already completely exhausted). All in all, we got some pretty decent sleep last night. Reagan woke around 7:30am, not happy but not fussy either. She's been very serious and zoned out all day. She's having lots of chorea and she's very tense and cold/clammy...but she hasn't fussed or cried at all today. She has had two dirty diapers, so maybe that's helped her feel a little better. I don't know. I do know that we're ready for some good days again. Hopefully this means that next weekend she'll be a happy girl for the walkathon! I just hope her super pregnant mommy is able to walk a 5k walkathon!!! I went in yesterday for an ultrasound and everything looks fine. Apparently this is just a really big baby! At exactly 34wks he's weighing in at 6.5lbs and in the 95th percentile! I hope this doesn't mean c-section! I'm not sure how I would cope not being able to lift Reagan for 6wks! Thank you for your continued prayers for both my girl and for this pregnancy!!

Friday, January 27, 2012

Definitely a bad day

Sleep last night was better...the day, however, was not. Reagan fell asleep sometime around midnight and then slept til 5:45am. I got up with her and she was NOT happy. She cried pretty much nonstop til 7:30am. That's when Mike was about to leave for work and he picked her up. Immediately she was quiet. I took her back and she started crying again. Mike walked back in the room and just started talking to her and she was quiet!! I told him maybe he should stay home from work, but that didn't happen. Reagan was actually pretty good (considering) this morning for her nurse. She was still fussy/whiny but she wasn't crying. She dozed off right around 11am and then took a little nap. She didn't wake happy though and the crying started up again. Her OT came and managed to swaddle her up and get her to doze back off. When she woke up again, not only was she cranky but she was very sweaty!!! Her hands and feet have been cold and clammy all day today. She's trying to bite so we've had to keep her arm restrained all day. Her heartrate is up and the chorea is out of control. She kicks so much with her legs, she looks like she's going to jump out of her chair. She's also made a few gaggy faces, but when I drain her tummy nothing much comes out. We gave her a bath around 5:15pm and she dozed back off as we were getting her dressed. Today was definitely a full blown bad day...but I'm glad to see her finally getting some sleep. Hopefully she gets some decent sleep tonight and she wakes up feeling a little better tomorrow!

Thursday, January 26, 2012

Next to no sleep

Last night was another night of next to no sleep. Reagan woke up shortly after Mike got her to sleep. I sat up with her pretty much the entire night. She was wide awake most of the time. She did drift off for a little while and I tried putting her in her chair, but she woke up only 15min or so later. It was a long night. I attempted to get some sleep this morning after her nurse got here but that didn't go well either. Nonstop calls kept waking me up, so I finally gave up on it. Reagan has been a good girl all day. Sure she had moments where she sounded a little whiny but she never went over the edge. She even did great with PT this afternoon and stood in her stander for almost an hour afterward. She's been good most of the day...just a few whiny moments here and there. My only concern is that she's had clammy hands and feet all day and tonight she has a definite bad day smell to her. We've had several off days now where she's not sleeping and not feeling quite herself. I'm not really sure what's going on and I have no clue what to expect of the next few days. I was hoping for some better days ahead, at the very least, some sleep! Speaking of...I'm off to get a few hours in case Reagan decides to pull another all nighter! Goodnight (hopefully)!

Wednesday, January 25, 2012

And back to cute

So today wasn't quite the day I was expecting out of my girl. She was a little fussy and on edge last night so I was anticipating the worst today. I'm glad I was wrong. She fell asleep for Mike but was very restless. He came to bed and I got up and made her formula and all the while she stayed asleep. Then not long after I laid back down, she was awake again. I got up with her and was surprised to find her very sweet and smiley. We sat up for a while til she finally drifted back off. I put her back in her chair and she slept there til about 6am...and she's been up ever since. No naps at all today. A few times she started looking tired and even got a little whiny, but she never dozed back off. She's actually been a good girl all day. Very active, very smiley. Tonight she fell asleep on Daddy around 11pm. She was out. He got up to lay her down and she was wide awake again. Now she seems a little on edge (for the first time today) and more wired/whiny than sleepy. Ugh. This mommy needs some sleep! I have no clue what tonight holds (or tomorrow for that matter), so please continue to keep her in your prayers!!!

Tuesday, January 24, 2012

From crazy to on edge...

I went to bed after midnight and then woke up this morning at 5am. I looked at the monitor and Reagan was still sleeping. I got up because I could see a light on down the hall...my mom was leaving to head back to Dallas. I said goodbye to her and locked the front door and by the time I laid back down in bed, little Miss Reagan was wide awake and "talking". I laid down for a few seconds and it was clear that not only was she not going back to sleep, she was going to be way too noisy for me to fall back to sleep! So I got up with her and the two of us have been up ever since! I was both surprised and relieved to see that she woke up happy. She's been a ball of energy all day today. Very squirmy and still vocalizing nonstop. We were nurseless today so Mike had to take the morning off to watch Reagan so that I could go to my doctor's appt. It was a quick appt and I was back by 11am. I found out that I'm now measuring 37 weeks (but I'm really only supposed to be 33 weeks)...so I have an ultrasound scheduled for next week (to check his size and amount of amniotic fluid). Hopefully he's just a little big and was in a weird position that made it seem like I was measuring that far ahead. I don't need a giant child and too much amniotic fluid is not a good thing either. Anyway, when I got back Reagan was still being her crazy self. She had OT and her therapist was really impressed with how well she was doing. We then had to skip "school" and load up in the car to head in to the medical center to pick up her EPI-743 from her mito doctor's office. Talk about a pain (especially having to drag Reagan up there with me). She was good though and we got in and out quickly. I actually met a woman on the elevator who was in from Tennessee to see our doctor. Her son was just diagnosed with mito (Leigh's) so she had lots of questions. I gave her my blog address but in retrospect, I probably should have given her my phone number too! I certainly don't mind answering questions and keeping our family up to date on Reagan's health and helping other parents out is exactly why I started the blog in the first place. So then we headed back home and made it back just in time for PT. This was when I started getting sleepy (and have been exhausted ever since). Reagan was good until right around 4pm when she started getting fussy. Lots of grunting, whining, and just all around restless. She was super high maintenance, but I was able to keep her from crying...that is until 6pm. That's when it hit her. The tears started flowing so I picked her up and immediately she had a dirty diaper. I changed her and for a bit it seemed like she might be feeling better, but then it hit her again and she was all tears for a while. She's been a little better for Daddy, but she's still on edge and sounds like she could have a meltdown at any moment. I'm going to try to get to bed early, in case I've got an all nighter ahead of me. Please keep her in your prayers and lets hope this is just a few rough moments instead of a full blown bad streak!!!

Monday, January 23, 2012

Spunky one

Reagan slept fairly well last night. She woke around 5am making noises in her bed, but she went back to sleep and slept through til 8am. She was happy again today but a little crazy too. OK, sometimes a lot crazy! She's been extremely vocal all day. Lots of squealing, babbling, grunting, even screaming at times. She's also been very active. Definitely an increase in chorea. Legs kicking around nonstop, hands up in her hair or mouth at all times, rolling on the floor or out of my arms. She's been a spunky one today. I'm not sure what this means for the next few days. Typically bad days will follow crazy days, but I'm hoping maybe we'll skip over that (or at least have some mildly off days instead). Tomorrow Reagan's nurse is having a medical procedure and not coming in and then Wed we're trialling a new Wed nurse, so we could really use a break these next couple days! We did have a potential night nurse come and orient today and I think she might actually work out. She had a great personality...too bad she doesn't work days! With nights it's kind of a hit or miss thing. Some nights Reagan sleeps the entire night and there would be nothing for the nurse to do, but then other nights she's up the entire night...and so am I. The big issue will be when we have another little one waking us up. It will be nice to have a little help. Speaking of help...my mom and I worked all day trying to clear out the baby's room. There's still some leftover junk, but we made a lot of progress, hopefully I can finish it up myself this week and we can get the crib put together! It's making me nervous having so little done, this far along. I'm 33 weeks this week. I've actually got a doctor's appt in the morning, so I'll give everyone an update tomorrow. Until then, keep our crazy girl in your prayers!

Sunday, January 22, 2012

So sleepy

Our sleepy girl decided to wake up this morning around 5:30am. I had to get up and change her diaper (which she had completely soaked through) and decided to just get up with her. She was precious and awake for about an hour or so and then she was back out again. I laid down for an hour and then heard her moving around again, so I got back up with her. She fell back asleep again but this time I just stayed up and tried to get some filing done in the extremely cluttered room that's supposed to be the baby's room. Reagan has been awake and asleep, awake and asleep, all day today! When she's awake, she's happy and energetic, but then before you know it, she's conking out again! I'm not sure what's going on with her, why she's so tired, but I guess her body needs it, so we just let her sleep. I'm pretty tired too. Hopefully she sleeps tonight and is finally awake and back to normal tomorrow!!!

Saturday, January 21, 2012

Precious girl

We thought Reagan slept well last night. I saw her on the monitor moving around in her bed just before 8am so I got up to go get her. She wasn't awake though...her eyes were still closed. So I went in the kitchen and got her medicine and when I went back in to give it to her, she was wide awake and smiling! She's been a real sweetie today. Very smiley. She was starting to get a little sleepy around noon, but her speech therapist came for a make up session and got her going again. She was awake and full of energy for a while and then right around 4pm she dozed off in her chair and she's been asleep ever since. I really thought she was only going to take a little nap, but nope! She was out! Now, hopefully this doesn't mean she's going to wake up in the middle of the night, ready to go. Usually that's not the case...but you never really know with her. Tomorrow Grandma is coming in to see her, so hopefully she wakes up being sweet again!

Could she be any more precious?!?!

Friday, January 20, 2012

Another loose tooth

Reagan slept well last night. As far as I know, she slept straight through til 8:30am when we found her awake in her bed, kicking and squirming around! She's been a sweet girl today. Lots of smiles and very active. Wanting to have her hand in her mouth or her hair at all times and then moving around and crunching in half nonstop...driving her therapists crazy (not to mention her mommy)! Her other bottom tooth is loose and she's constantly moving her tongue around the area and putting her fingers in her mouth, I'm surprised she hasn't lost that one too already. Tonight our Bible study met for dinner and all of the kids were there...it was pure chaos! Reagan seemed a little overstimulated at first, but she got over it and did surprisingly well with all of the noise and screaming! Of course when we got home she was still pretty wired. I hope she's able to get some sleep tonight...I'm exhausted! There's no such thing as an early night in this house. I don't remember the last time we made it to bed before midnight (usually Reagan is up til 11-11:30pm, so we don't really have a choice). Goodnight!

Thursday, January 19, 2012

Cute laughs

Reagan slept OK last night. She woke up around 4am and I'm not sure if she went back to sleep. Mike got her and put her in bed with us, and snuggling with her Daddy, she fell asleep almost immediately. Unfortunately, that didn't last long. The second he moved, she woke back up and she was up for good! I got up with her right around 7am. She's been very giggly all day today. Not crazy laughs, just cute laughs. Her hands and feet have still been clammy most of the day, but otherwise she's been good. Super sweet. Super cuddly. She had speech, then her teacher, and then PT today. Busy day. Her teeth don't seem to be bothering her. She does put her tongue on it a lot and was a little more spitty today, but she seems good. I spoke to her pediatrician and she said not to worry about it and that Reagan is just about the right age to be losing her first tooth (and it's the right tooth to be losing first). Tonight she did have another random throw up. Not as much came up this time (and nothing came out of her g-tube when I drained it)...I guess even though she seems to be feeling better, she's still getting over her bad days. I'm just glad to see my girl smiling (and laughing) again! Thank you for your prayers!

Wednesday, January 18, 2012

Nurseless & Toothless

Reagan did not sleep well last night! We woke up around 3am to find her wide awake and kicking around in her bed. I tried covering her up and shushing her back to sleep but that didn't work. She was quiet though, so I just let her be and I tried to get a couple more hours of sleep. Of course, I kept waking up and staring at the monitor, but each time she was still awake, still moving around. Mike even tried laying with her but she was not going back to sleep. I finally got up with her around 7:45am. She's been good today. She only took one small nap this morning and she's been awake the rest of the day. Still tense, still clammy, but she's been quiet and content to just sit in her chair and hang out with me as I attempt to get some housework done. As of now, we are without a Wednesday nurse again. I'm sure that it had something to do with me finally calling her out on being late to work every single day, but whatever. Hopefully we can get someone good to fill it ASAP, so I can train them and not be freaking out about what I'm going to do when I go into labor! Thankfully we do have one nurse who has been with us for almost two years now, who I trust completely and can count on during that time. Despite still feeling off, Reagan was pretty good today. She had speech this afternoon and seemed to enjoy licking on a cotton candy flavored dum dum. Her lips and tongue were all blue afterward. Then tonight, totally out of no where, she started throwing up. Quite a bit of foamy throw up came out and it lasted for a couple minutes (and I drained some yellowish bile from her g-tube). It really wore her out. Afterward I was wiping her mouth off (because she was still very spitty) and I noticed...she was missing a tooth!!! Her bottom middle left tooth is gone!! I have no clue when it happened and at first we figured she had probably swallowed it (Mike later found it on her brown chair). What's strange is that she's still 4 (she'll be 5 in March)...but it's a little early for her to be losing her first tooth! What's even weirder is that she was very delayed in getting her teeth. She didn't get her first tooth til she was over a year old but by the time she was two, she had them all. I don't know what to think about it. I guess I'll call her dentist tomorrow to get his opinion on it. I guess some tylenol might be in order. I sure hope she can get some sleep tonight...she must be exhausted!! Please keep her in your prayers!

Tuesday, January 17, 2012

Not too bad

Reagan slept last night!!! I didn't think it was going to happen...but she did! She started making some fussing noises here and there starting around 5:30am but she stayed asleep til right after 8am! She woke serious again, but she wasn't really fussy. She actually hasn't been fussy at all today. She was a little groggy this morning and fell back to sleep just in time to miss both OT and her teacher...but has been wide awake ever since. The only therapy she had was PT this afternoon. She did get pretty upset when her PT tried to stretch her feet and even shed a few tears, but she calmed down as soon as she stopped! She's had three dirty diapers today, again a little unusual for her, but glad she got it out of her system! Overall, it wasn't such a horrible bad day. You can tell she's still not feeling well. She's tense, her heartrate is up, she's a little bitey, her hands and feet are cold and clammy...but she's doing her best to be a good girl. Which is a good thing because her nurse had to go home early today with neck pain and I was just notified that our Wednesday nurse won't be showing up tomorrow either!!! The worst part about it is that I have a million things I need to do! We've been out of town so I not only have lots of household things to catch up on but I also have a ton of errands I need to run. I guess those will have to wait til later in the week when we have a nurse again. Thank you for your continued prayers for our little one!

Love this pic of her sleeping on her Daddy tonight...

Monday, January 16, 2012

Bad day

Reagan has had a miserable day today. She slept well last night (thank God), but it was apparent when she woke up this morning that this was NOT going to be a good day! She had a frown on her face, clammy hands, and a sweaty back. She was fussing from the get go and it's continued pretty much the entire day. She's been sleepy though, so we have gotten some breaks from the moaning and crying. It's a mad sort of cry too...eyebrows knitted at all times. You can just tell she doesn't feel well and she's certainly letting us know. We've kept the arm restraint on her all day because when she woke this morning she was already going for that hand. I'm hoping she'll sleep tonight and wake up feeling a little better tomorrow but I know how this goes and I'm not counting on an overnight recovery (although it would be nice)! This dysautonomia really wreaks havoc on my girl. Please keep her in your prayers!!

And while you're at it...go on to our site for the Energy for Life Walkathon and sign up to walk and/or make a contribution to our team Rallying for Reagan! Fundraisers like this help to not only raise awareness but much needed funds for research that may one day result in a cure for this devastating disease!!!

Sunday, January 15, 2012


Reagan slept well last night...and so did we (except for a killer cramp I had in my foot at 6am that I woke up screaming with). We actually slept in til 8:45am or so. When I went to check on Reagan, she was laying in her bed wide awake and quiet. She's been a sweet girl today but she did wake up with clammy hands (and tonight they were cold and clammy). Most of the day she's been very calm, sweet, and snuggly but tonight she was slightly on edge...hopefully she was just tired. I think we're all still a little worn out from all of the traveling. I'm going to try to get my pregnant butt to bed tonight before midnight, so I'm going to cut this post short! Goodnight!

(if you didn't already, go back and read the post from Friday!)

Saturday, January 14, 2012

Back in Houston

We're finally home! It's been another long one...we didn't get home til after 8pm tonight. Reagan has been such a good girl today. We did have one little incident this morning before we left the hotel where I thought we might be in trouble, but it was obviously just tummy pains because she was fine after she had a dirty diaper only a few minutes later. She's been very smiley and sweet today. She's still crunching forward a lot, which has been driving me crazy in the car with her leaning out of her seat the whole time! She did well on the flight...she actually looked like she might fall asleep for a while, but that didn't last. Things got a little scary toward the end of our flight. About 45min til we were supposed to land we smelled some sort of burning smell...even the flight attendants came over and were smelling it. Then we started our decent and a flight attendant came over the speaker and reminded us that we should leave all carry on baggage if we should have to evacuate the plane. That's when I started getting scared (and I said lots of prayers). Even after we landed (30min early) it still seemed something fishy was going on. We sat for a while on the runway before we finally were able to get to a gate. I still have no clue what that was about. Mike saw the captain as we were getting off and he mentioned the burning smell and he said something about it just being the heater on the plane, but who knows. So I'm certainly glad to be home and on solid ground now. It's 1am our time and we just put Reagan to bed...time to join her!

Friday, January 13, 2012

Clinic appt and trip to Monterey

It's been another long day today. Reagan decided to wake up sometime between 3-4am and then talk our ears off. We tried to sleep in the bed beside her, but she was wide awake and babbling away! Finally around 6:30am we got up and started getting ready. We had an early 8:30am echo/EKG scheduled over at the hospital before our clinic appt with Dr. Enns. We also still needed to give them a urine specimen, so I put a bag on Reagan and figured we'd catch a big one since her diaper was still dry. When we laid her down for the echo, I checked her diaper. We had pee. Just a little though. I went ahead and transferred it to the cup we had. Then they performed the echo and EKG. Reagan was a squirmy worm and we had to hold her down the entire time to keep her semi-still! Before we left I checked and she had a huge wet diaper!!! (I should have left the bag on) I went ahead and put another bag on her thinking we might get a better sample by the time her appt was over. As we headed over to the appt, Reagan was beginning to get tired (yeah probably because she'd been up since before 4am)! Our appt with Dr. Enns didn't provide the information we had hoped for. They still didn't have the results of the second brain scan, but promised they would contact us as soon as they heard something. Dr. Enns did notice that Reagan had a slightly elevated CK level. This is something that is typically elevated when there is damage to muscle. Dr. Enns says he sees it sometimes in kids with mito and also sees in kids without mito. Apparently her levels of this were fine the last time we were here, so he just wants to keep an eye on it and check it again once we're back home. Also, he noticed that her white blood cell count was low. Specifically, she was neutropenic. Apparently the last time we were here her levels were even lower than they were this time, but this time they were still below normal. What's interesting about this is that my sister was diagnosed as a child having a blood disorder called chronic benign idiopathic neutropenia. They never found a genetic link to her having it and she managed to do just fine with it, although she had to take neupogen (G-CSF) injections for years. No clue if this is just coincidence or not, I remember noticing years ago in Reagan's blood work a lower than normal neutrophil level, but when I brought it up to doctors they just blew it off. We also discussed keeping Reagan on the EPI-743. Since we "think" we've seen some slight improvement and we haven't necessarily seen any cons, we're going to keep her on it. Before we left the appt, I checked her bag to see if she had gone again. No pee, but there was a little blood! I was shocked! Never seen that before. As it turns out, that stupid bag I had put on her must have made a tiny little cut in that sensitive area...poor girl!! I felt terrible, but other than a slight little frowny face during the appt, she seemed fine. We finished up there around noon and decided to drive down to Monterey. Mike and I went there during our honeymoon, so it was neat to go back again with Reagan. We walked along Cannery Row and had lunch at a restaurant right off the water. We had a great view and watched seals and waves come in as we ate. Reagan was a princess the whole time. Then we headed to 17 mile drive. We drove along Pebble Beach and then got out and walked a trail along Spanish Bay watching the huge waves and crazy surfers venturing out into it! There were seals everywhere. As the waves welled up, you could see the seals riding along in the waves! It was pretty neat. Around the time we finished up there, I checked my email and had already gotten an email from the study coordinator. They had good news about the results of the brain scan. They found a 30-50% increase in her cerebellum (activity) compared to her initial scan. So that's good news! I wasn't necessarily expecting to hear of any improvement, since I've heard that the anesthesia can sometimes mask improvement in these scans, but I'll take it!!! Then we had a long drive and were happy to finally get back to the hotel to stretch out and relax. My feet are totally swollen...I think I might have done a little too much today! Our flight leaves at 12:30 Sat afternoon, so I think I might wait to pack til tomorrow morning! Pray for sleep tonight and a safe trip back with a happy Reagan!

Thursday, January 12, 2012

Brain spect done

Reagan slept OK last night but then around 4:30am she decided it was time to wake up. She was very talkative and there was no getting her back to sleep. Finally around 6:30am I gave up on sleep and got up with her. She's been full of energy all day. Lots of squealing, crunching, kicking, and biting at her wrist. We had to put her arm restraint on to keep her from doing any more damage. Everything went surprisingly well with the procedure today. Reagan was great....but very active. They tried giving her Versed to calm her down a little so they could place the iv, but it didn't seem to do anything for a while, then for about 10min or so she seemed a little calmer, and then it was gone. The nurse that placed the iv, got it right away but then didn't have everything ready and blood was going everywhere. She eventually got it taped down but I think it might have been too late because Reagan had an iv in the other foot when we saw her in recovery. We had a different anesthesiologist today (who had a fellow working with him). Reagan was kicking around so much, they let us go with them down to the room where the scan was going to be done, and Mike carried her the whole way there. They had Mike hold her as they were starting the anesthesia. She was taking a while to get tired, so eventually he put her down and they realized there was a kink in the tubing. Within seconds of fixing that kink, she was out! We left and met up with the study coordinator so they could draw our blood for a different mito genome study they are doing. Then we waited. It was about an hour and 45min later when they called us back to recovery. She was OUT. It took a while for us to even get her to move (she didn't like the sound the curtain made when it was pulled, so Mike kept moving it around trying to wake her up). A couple of times she opened her eyes up and looked around, even crunching forward, but then she'd lay down and be back out again. We never saw the anesthesiologist or the anesthesia nurse again. We assume everything went smoothly...the recovery nurse didn't seem to have much information on how the procedure went. Reagan was still groggy when we put her into her stroller to leave, but at least she was cracking her eyes open. When we put her into her carseat, those eyes popped open and she's been a ball of energy ever since!!! Back to squealing and finger chewing...she's a handful. Tomorrow's agenda is an early 8:30am echo/EKG and then a clinic appt at 10:30am with Dr. Enns and the study coordinator. Hopefully Reagan lets us all get some sleep tonight because it's going to be another early one tomorrow! Thank you all for your prayers for our girl. Hopefully we get some good news about the results of the scan tomorrow!

Wednesday, January 11, 2012

California here we come

We're here!!! It's been a long day but we made it to California. We were up at 4:30am this morning and we're still not in bed yet (it's after midnight our time...after 10pm CA time). Reagan slept all night and then woke this morning when we put her in the car. She fell back asleep once we got to the airport and then slept until it was time to board the plane. Everything went smoothly. Reagan was good and awake the whole time (well except for the last 10 min or so right before we landed). Very smiley, but very crunchy (constantly crunching forward at the waist). Her hands have been up in her hair or in her mouth most of the day and she's got scratch marks on her face to show for it. She's also been biting her lower lip, so her poor little lip is all red. We made it to the hotel around 1pm and then this afternoon we all took a little nap. Tomorrow Reagan has her brain scan. It's scheduled for 1pm (pacific standard time) but we have to be there by 11am (or even a little earlier to pre-register). We have to stop her formula feeds around 7am and then switch her over to pedialyte til 10am. They want to try to get her iv going by 11:30am so she's not fasting for too long. Probably a good idea. Now if you remember the first time she had this scan done, the anesthesiologist very nonchalantly mentioned that they had a moment where she stopped breathing (he gave her too much sedation)...please keep it in your prayers that there are no problems like that (or any other problems for that matter) this time around!!! Now I think it's time for bed!!!

Our sleepy girl...

You can kinda see the scratch on her cheek here...

We finally put an arm restraint on her to give her poor little face a break!!

Tuesday, January 10, 2012

Sleeping the day away

Reagan slept all night last night...and then all day today!!! That's right, she slept all day long. Her poor nurse didn't have much to do. Reagan would stretch and make a noise here and there, but she was not waking up. Finally around 5:30pm she opened her eyes and was awake. She was actually moving around quite a bit (I expected she would be more groggy). We gave her a quick bath so she'd be ready for our trip and then she was sitting in her brown chair watching me cook dinner and the next thing I knew...she was out again. We put her in her bed and that's where she's been ever since. Every now and then she'll move around and stretch, but she's staying asleep. Hopefully she continues to sleep because we have to be up by 4:30am!!! Of course it's 12:30am now. I put off packing for a while and then tonight I paid for it. I'm exhausted and my feet are killing me. Can't wait to spend half a day traveling tomorrow!!! Please keep us in your prayers for a safe, easy trip and a happy Reagan!!!

Monday, January 9, 2012

Laughing instead of sleeping

Reagan was up all night last night...laughing. Even when she appeared to be asleep (still & eyes closed) she would giggle here and there. When she was awake, she'd really go to town. We just left her in her bed and tried to get some sleep, but we were listening to her the whole time. Finally at 6am, I decided to just get up with her (three days in a row I've gotten up at 6am...not good when we don't go to bed every night til after midnight)! The laughing continued and she eventually woke up Grandma. We were not encouraging it, but when she gets like this, she just laughs at everything (it's definitely something neurological). She did eventually calm down a little and stopped laughing nonstop and was laughing a little more appropriately. This morning her feet and hands were still very cold and clammy but tonight they've warmed up and dried out. Maybe this means we're officially done with bad days for a while. I hope so. We leave for Stanford early Wed morning and we need a good girl for traveling. She was wide awake all day today, but she started dozing off tonight around 10:30pm so I'm hoping she's out for the night. We all could certainly use a good night's sleep! Thank you for keeping our girl in your prayers!!

Sunday, January 8, 2012

Out of control laughing

Reagan was up a lot last night. She only slept maybe an hour and a half or so after being put into bed and then she was awake making fussing/grunting noises. Mike went and laid down with her, but she was NOT going back to sleep. The chorea was out of control and she couldn't stay still for one second. Mike put her arm restraint on her to keep her from biting herself and then he laid back down in bed. I don't think Reagan ever went back to sleep. Finally around 6am she started making noises again so I decided to just get up with her. I found her in bed with most of her covers kicked off and the arm restraint completely pulled off! I picked her up and brought her into the living room and that's when I noticed a nasty little bite mark on her wrist! I'm not sure if she bit herself before or after the arm restraint was put on, but it was definitely a bite (you could see the curve where her top teeth cut into her). What's funny is that as soon as I got up with her she started laughing and she's been laughing all day long! Almost nonstop. She'll laugh appropriately (at things that we do) but then she'll just laugh for no reason at all. Lots and lots of laughing. This afternoon she had a throw up that seemed to come out of no where but ever since she's been very spitty and a little gaggy. Tonight she had another throw up but I think the laughing and the excess spit is what caused that one. She's definitely still off. The crazy laughing, not sleeping, the chorea, the nausea, and her hands are still clammy. I'm hoping she's headed for a nice long streak of good days. Our trip to Stanford is on Wednesday and I've got my work cut out for me considering I haven't even thought about packing yet! Please keep our girl in your prayers...that she can get some sleep and that she can get over these bad/off days once and for all!!!

Saturday, January 7, 2012

Not feeling well

Reagan slept last night and woke sometime around 6am fussing. Mike got up and laid in bed with her, but she just kept grunting and making noises...she was not going back to sleep! So I got up with her around 6:30am and we've been up ever since! She's been in an OK mood today, not fussy but not at all happy either. Maybe it has something to do with the 3 dirty diapers she had before noon!?!? Three dirty diapers yesterday and three today...that is VERY unlike her! I'm beginning to wonder if maybe she has some sort of stomach virus or something...because she just doesn't seem to be feeling well. She's also still having a lot of signs of bad days. Super cold/clammy hands, very tense, a little more aggressive with her biting, and tonight especially lots of bursts of chorea (she'd doze off and then pop up wide awake and stressed with her adrenaline going). Hopefully she's able to get some sleep tonight! My baby shower was this afternoon and even though she wasn't feeling her best, we did take Reagan over for a bit just so everyone could see how big she's gotten (and to show off how cute she looked in her Big Sister shirt). No smiles though. Not one. Not all day. Oh well. Maybe she's saving it all up for our trip to California?!?! That would be nice of her. The shower was great. Lots of people came (some that I haven't seen in ages) and we got all kinds of neat gifts (which is great because we had literally not bought a thing yet for poor Ryan). It's funny, I remember when we had Reagan's baby shower, her room was completely done. Painted, furnished with brand new beautiful furniture, custom made bedding, decorated to the tee! Ryan's room is still filled with boxes, misc office furniture/supplies, and everything else that doesn't have a home! Hopefully we'll be able to get organized in the next couple weeks so I can have some piece of mind. In the meantime, he better stay put!! I've got an appt next Tues and my doctor said if I'm still measuring big then she'll schedule another ultrasound. So we'll see...

Friday, January 6, 2012

Rallying for Reagan

Reagan slept last night, the whole night through, in her bed!! Yay! I'm glad that she's finally getting some decent sleep. She woke this morning, much like yesterday, very serious and tense. No smiles all day, a couple of laughs but they were forced and few and far between. She's still very clammy and chewing on her left hand nonstop (but thankfully not biting). For not feeling well (which you can tell she doesn't), she's been a good girl. Today she also had 3 dirty diapers...very unusual for her and they were a weird pebbly consistency. Not sure what that's about. I'm just hoping she's feeling better tomorrow. I'm having a baby shower tomorrow and I'd love for her to come over so everyone can see her. Smiles would be great. Maybe Grandma can get a smile out of her. We'll see. Meanwhile...it's time to start cracking down for the walkathon this year. Registration is way down and so are donations. Our team Rallying for Reagan is actually in the lead right now because we raised over $3000 doing two garage sales...but we are really lacking in the individual donations and registered walkers compared to last year! So those of you in the Houston area...join us on Feb 4th at 2pm and help us raise awareness for Mitochondrial Disease!! And those of you that can't join us, please consider making a donation. Every little bit helps! This money goes toward much needed research, research that some day might find a cure for this devastating disease!!

Thursday, January 5, 2012

Oh sweet sleep!!!

Reagan finally slept last night!!! I went to bed around 11:30pm and Mike stayed up with Reagan. I was going to get up at 1:30am and then let Mike get some sleep. I woke up at 12:30am to him trying to hook up the monitor. Reagan had fallen asleep in her chair in the living room...and there she slept...the entire night!!! Thank you Lord! We all really needed that sleep! Reagan actually slept in til right around 9am. When she woke, she was very serious and very tense...that's how she's been all day. She didn't crack a smile the entire day. She's been very cold and clammy, yet sweaty. All the symptoms of a bad day, yet she's been fairly calm. She got a little whiny a few times, but overall she's been quiet. We took her in to the hospital for a routine gj-tube change and she was good the whole time. We had to sit and wait almost 2hrs in the waiting room but once they took her back, it didn't take more than 10min to change it out and she was a perfect angel. Tonight she was dozing off in her chair so Mike picked her up and she was out! Hopefully she sleeps again tonight. I'm still recovering from the last couple days and I could use the rest!! Thank you for your continued prayers!!!

Wednesday, January 4, 2012

Still not sleeping

OK...so here is the post I promised. Reagan was pretty much up the entire night last night. She and I both slept about 1.5hrs and that's it! She was wide awake and a little fussy/moany. She did have one big crying outburst but then she had a big dirty diaper a few min later, so maybe that's why. Needless to say, it was a loooong night! I was ready to go to sleep the second the nurse got here, but she was 30min late and then not ready to actually start working for another 15min, so let's just say that I was not too happy about that. I absolutely HATE it when people are late! Especially to a job! And especially when it happens over and over again. Believe me, Reagan's therapists are aware of this and so are her nurses. Anyway, after I laid out and explained the medicines I was able to lay down for another hour and a half. Then I had to get back up and do more medicine. Yes, I need to be better about delegating, but this nurse hasn't been with us very long so there are some meds (like her seizure meds) that I'm still not comfortable with her giving. Eventually I was able to lay back down and get another couple hours of sleep. Of course, I got NOTHING accomplished around the house. Reagan was OK most of the day (she even had OT and speech) but she got a little fussy and had a few crying episodes this afternoon and tonight. Her hands are ice cold, she's sweating more on her back, she's been super spitty, and she's been a little more tense today...all signs of bad days. Tonight I did manage to get a few smiles out of her, but they were few and far between. She seemed better just left alone in her chair (which kills me because I want to hold her). Please continue to keep our girl in your prayers.

Tuesday, January 3, 2012

Up all night

Reagan slept about two hours last night...and then she was up the rest of the night! Wide awake. I got up with her and we hung out all night. She was never even close to dozing off again (but at least she wasn't fussy, she was actually quite good)...I guess that 2hr power nap was just what she needed. I, on the other hand, was exhausted! Of course she would choose to do this on a day when I have to get up early anyway. Last week my doctor told me that I failed my 3hr glucose test (my 1hr was off by a couple and my 2hr was off by about 20). So now I'm considered to have gestational diabetes. Lovely. Especially considering I ate nothing but carbs/sugar all through the holidays!! So now I'm paying for it. I have to adjust my diet and check my blood sugars 4x a day...should be fun. This morning I had a diabetes education class from 8am-noon (and I had to leave my house by 7am), not so great timing on Reagan's part!! She's been good today though. Still moving, moving, moving, with the occasional vocalization but a little less on edge. She was also a good girl when we took her to the doctors office for one last blood draw for the EPI-743 study. Of course, she did give her Daddy a hard time today. This morning and tonight when he got home from work, he came in and started talking to her and immediately she started up with the pouty lip and tears!! She got over it though and tonight she fell asleep in his arms (but not before putting up a good fight). Speaking of...I better get to bed ASAP in case she decides to pull another all nighter! Please continue to keep her in your prayers!!

Monday, January 2, 2012

Fighting off bad days...again

Reagan did sleep last night. That's the good news. She woke me up with a squeal this morning around 6:50am. She was wide awake (and had a huge wet diaper...she usually doesn't go unless she's been awake)...so I'm not sure how long she had been up. Her hands were like ice, so I put her in bed with us and she snuggled with Daddy and fell back to sleep. My alarm went off at 8am (for her medicine) and she woke up about 10min later...probably my fault. She was happy, but feisty again. She's definitely a little off. This morning she had a random throw up and then I drained a good amount of fluid from her tummy. Her cheeks, chin, and nose are red (for whatever reason). And the chorea has definitely picked up (along with her heartrate). She's moving a lot and can't sit still for a second, she's squealing and super vocal (but sounding a little on edge or whiny most of the time), she's snapping those teeth like a snapping turtle, and there's a hint of the bad day smell coming from her...all signs that she's fighting off bad days. I'm hoping she'll pull through and skip over the bad days once again. It would be nice to keep this string of good days going. Although most importantly, we need her good by the end of next week. That's when we go back to Stanford for her EPI-743 follow up. I definitely think we've seen some improvement since starting it. She's been a lot more vocal since getting on it and her speech therapist has even mentioned to us that she seems a lot more aware and alert during her sessions. Of course we're hoping for long term, significant improvements...but so far so good. Please keep our feisty girl in your prayers!

Sunday, January 1, 2012


Reagan slept the whole night through again and woke up this morning feeling spunky! She's been full of energy all day today. On the floor, she kicks and squirms right off of her mat in no time. She actually does the same in your lap...she's hard to hold onto! Of course her hand has been in her mouth or she's pulling her shirt into her mouth at all times. When I put her on my shoulder, she gets really feisty and starts up with the squealing/babbling and putting her teeth on my arm and my shoulder (which was cute, that is, until she bit me tonight...my little vampire)! This morning we thought she might sleep all day again. She fell asleep while laying on the floor watching a movie and slept for at least an hour or two...but she's been a ball of energy ever since she woke up! Then tonight she fell asleep around 8:30pm and Mike even laid her in bed, but she was back awake and kicking less than 10min later! It's 11pm now and she's dozing off again, so we'll see if she's able to stay asleep and get some rest tonight. Maybe clonidine will the do the trick?

Sleeping beauty this morning...

Who needs tattoos, when you can have bite scars!!