Sunday, July 31, 2011

Testing my patience

Reagan was a real turkey again today. Last night she slept in her brown chair til about 5:30, when we heard her fussing. I got up with her and then Mike took over, but she didn't really do much sleeping after that. In fact, she didn't take a single nap all day long! She's been very spitty today (the thick, gunky kind of spit) and this morning she had a big throw up because of it. That was the only throw up and she hasn't really been nauseous at all today. I did drain some fluid (some of it yellow bile) out of her stomach though, so I'm not sure what's going on there. Today she's definitely been better for her Daddy. For me, she's been moany, fussy, and crying. I hand her over to Mike and she's fine (at first, anyway). She's been a real handful today. I did something to my back sleeping on the couch Fri night and it's definitely been hard to hold her, since she's always moving around and she's not happy just holding still, you have to continuously change positions with her. It's definitely been a long day. There have been times that I wanted to scream! And then there have been times where she's been just as sweet and cute as can be!!! This girl...she really knows how to test our patience! Reagan has been so high maintenance this weekend...I've got a house full of dishes and laundry, so I'm just waiting for the nurse to get here tomorrow so I can attempt to get caught up on everything!!! Please continue to keep Reagan in your prayers! We tried putting her in her bed tonight...hopefully she'll get some decent sleep!!

Saturday, July 30, 2011

Worse day

Reagan decided to give us a run for our money today. Yesterday wasn't all that bad of a bad day...but today she turned it up a notch! She fell asleep last night in her brown chair, so we put a monitor by her in the living room and we tried to get some sleep. Not long after laying down, I could hear her moving around. 30min later, she started fussing. I got up with her and got her back to sleep in an hour or so. I put her back in her chair and I tried to lay back in bed. She was restless though and I couldn't sleep knowing she was moving around (without me being able to see her). So I got up and laid on the sofa. There I tossed and turned all night. She moved around a lot, but never fully woke up. She's done a lot of that today as well. When she's awake, she's fussing and crying, but thankfully she's slept off and on most of the day (in our arms or in her brown chair). She has had her precious moments though. She looks up at you with those huge eyes that just make your heart melt! She's a doll...but she can also be a little devil. Biting and flailing...she has not been a happy camper. And lay her down to change her diaper...she cries and holds her breath til she turns purple! She's a handful, that's for sure! Please continue to keep her in your prayers!!

Friday, July 29, 2011

Not too bad, bad day

It's been a long day for my little girl. As you might recall, Reagan had fallen asleep last night but then woke back up and was laughing in her bed. Eventually the laughing turned into crying, so we picked her back up and the nurse took over around 11:30pm. According to the nurse, Reagan slept most of the night off and on. But from 2-4pm she was wide awake and crying. I'm just amazed that she slept as much as she did! Today she seemed a little groggy but she didn't really take many naps (and when she did, they were short). Overall, she was very fussy today but not crying nonstop. She's definitely had her moments though. Her hands and feet were still normal temps this morning, but by this afternoon they had changed to cold and clammy. Tonight she seemed a little more laid back...she'd fuss here and there but overall she hasn't been too irritable. You can tell, she wants to laugh...every now and then we're able to get something out of her that resembles a laugh. I'm not sure how much sleep we'll all be getting tonight...but hopefully some! Please keep our sweet girl in your prayers!!

Thursday, July 28, 2011

Crazy laughs

Reagan seemed to sleep a little better last night. When I woke at 4am (the same time I'm waking every single night), she was actually asleep this time! I'm hoping that means that she actually got a good night's sleep last night, but who knows. Today she's been sweet and giggly. The crazy kind of laughs though. The kind of laughs that make you think she's right on the verge of bad days...but cute nonetheless. She did have another random throw up this morning. Just out of no where, she was laying on her side in front of the tv and out it came! She's also been gnashing her teeth a lot. You can hear her snapping them together like a snapping turtle! She's been going at her hand a little more we've just kept it covered with a sock at all times. Then this afternoon, we had her in her stander after PT and all of a sudden she started making these grunting noises and her face was turning red. It escalated pretty quickly and we had to get her out of the stander ASAP. By the time we got her out, she was crying and very upset. We figured it was "intestinal", so I had to take one for the team and help her out and that opened the flood gates and we went through 4 diapers getting her cleaned up. After that, she seemed much relieved and happy once again! There was even a little blood in it, which had me a little worried because I've never seen that before, but I'm guessing it was from all the straining! Poor girl! Tonight she's been a little more "on edge" and had a few crying outbursts, but thankfully we've been able to get her under control and happy again. She fell asleep and we put her to bed, but I already hear her back awake in her bed laughing. Hopefully she'll get some sleep tonight. We have a night nurse tonight, so we should get some sleep at the very least! Please keep her in your prayers! (And thank you to everyone for your continued prayers for my pregnancy! It means the world to me!!)

Wednesday, July 27, 2011

Big, huge news

Reagan slept OK last night. Even with the clonidine, she was still up at 4am when I woke up. She fell back asleep and then I got up with her at 7am. She was all smiles again. Her feet were a little cold this morning and she has been a little over sensitive all day (startles easily and cried when the Wed nurse was talking to her), but she pulled through and had another good day today! I think our good days are numbered, but hopefully she can pull through with another good one tomorrow! So I've got two pieces of big news to share. HUGE pieces of news! The first...I'm pregnant! Yep! It came as a shock to me too (as we certainly weren't trying and may have never tried). I'm 7 1/2 weeks and already completely and totally nauseous (not having anything to do with the stomach flu we all had two weekends ago). Ah the joys of pregnancy! We're (obviously) very nervous, but excited at the idea of Reagan having a sibling to interact with. Normally I wouldn't reveal such news to the entire world (at only 7.5 weeks), but for obvious reasons we need lots and lots of prayers for this baby! Another piece of wonderful news I got today was that Reagan WILL be included in the EPI-743 study at Stanford. Unfortunately, they don't want to start Reagan in the study until Oct, which will put us having to do Reagan's last 13 week evaluation only 2 months before my scheduled due date. I'm hoping (because of our circumstances) they might consider letting her start a month or so earlier...but we'll just have to wait and see. We'll make it work. Period. I just want her in this study!!! So two big, huge pieces of news!!! Very exciting! Please say lots of prayers about both of these things! How great would it be if we could get Reagan feeling better before this baby is born! Imagine NO bad days!!! That would be awesome!!! Lots of prayers needed!!!

Tuesday, July 26, 2011

Out of no where

Sleep last night was pretty much identical to the night before (and the night before that). I woke up around 4am to find Reagan wide awake, covers kicked off, and smiling away! She did go back to sleep and then slept til right before 9am. She's been a sweet girl again today. She has been holding her pee though, so each of the three diapers she's had today have been super soakers (one getting the nurse and the other getting Daddy). She did have a weird episode this morning though. Right before her OT was supposed to show up, she had two random throw ups! No warning, nothing. They just came out of no where. After the first she was pretty sweaty and you could just tell she didn't feel well. About 15min later, she had another one and then fell asleep for a little while. I drained her tummy and got a decent amount of fluid out of it (certainly more than I would expect on a "good" day). When she woke, she seemed fine and then never did it again all day! Weird. This afternoon she had PT (which she did really well for) and then an appt with her PM&R doctor (physical medicine and rehabilitation). She's usually the one that writes the prescriptions for her AFOs (leg braces), arm restraints, etc. I mentioned that the custom hand covers just weren't working to protect her hands on bad days and I brought up the idea of a helmet. She didn't like the sound of that, but I told her how concerned we were that at some point Reagan may actually do irreparable damage to her hands!! I told her that we were only going to put this on her on her super bad days...obviously not something for every day use. I also spoke with her about Reagan's "bad" days and how frustrated we were that no one had been able to help us get a handle on this yet! She immediately knew exactly what was going on (that Reagan is having something called Autonomic Storms) and she also knew exactly what medications to try to treat it! She suggested a daily dose of clonidine (we're going to try the pills first, but may need to switch to the patch) and then daily diazepam. We've never tried Diazepam with Reagan (although we've carried it in her diaper bag ever since she started having's a rescue seizure med). She said the two of those work very well together in controlling Autonomic storms. It's just so crazy that of all doctors to help us with this, that she would be the one that would immediately know exactly what we were talking about. She even said it's like fight or flight...and I said, "YES that's exactly what it is!!!" So nice for someone to not only care but to have an idea on how to help!!! So we're going to start slow with a consistent pm dose of clonidine and then work up to twice or three times a day. Reagan's got an appt with cardiology next week (for her extremely high heartrate) so we're going to talk with them about all of this then. Hopefully everyone will be in agreement that this course of treatment is the way to go (for both the Autonomic Storms and high heartrate). And hopefully it will work!!! How awesome would that be!?!?!? Oh my gosh! It would be such a HUGE answer to prayers!!! Tonight all has been good except for a couple random meltdowns by our girl! One was when her Daddy picked her up (not that surprising) but the second came out of no where...the only thing I can think of is that she didn't like Mike and I talking amongst ourselves. Who knows! Hopefully she hangs in there and has at least a few more good days!!! She deserves them! Please keep her in your prayers!!

Monday, July 25, 2011


Reagan was up again last night. I'm not sure how long, but when I woke up at 5am to take my mom to the airport, she was already up and smiling (Mike said he had heard her awake and moving around for some time). When I got home from the airport an hour or so later, she was already back asleep and slept til 9am! She sure has been precious again today!!! Lots of smiles, lots of rolling, super sweet! She did give her Daddy a little bit of grief this afternoon. He came in to say hi to her and immediately she got this huge frown and had tears streaming down her face!!! Then tonight, she was fine! No tears, no frowns. Just sweetness! I sure do love this girl!!! Hopefully she gets a good night's sleep tonight! Sleep tight little princess!!

Sunday, July 24, 2011

Bahamas bound

Reagan slept last night...I'm not sure how much, but she did sleep! I woke up at 4am to find her wide awake, moving around in her bed. She was quiet and content so I went back to sleep. I woke several more times between 4-6:30 and each time she was still awake. Finally at 7am I woke up and decided to just get up with her, but when I looked at the monitor, she had finally fallen back to sleep! She slept til 10am and then woke all smiles once again! She's been super sweet and smiley all day today. Happy to just lay on the floor and roll around. She has been sounding a little congested times she sounds a little a little pig. And she's been coughing here and there but it sounds more like a choking on her spit cough than a real cough. Hopefully it's just allergies! We need a nice long good streak this go round!! Please keep her in your prayers! It sure is nice to not only have Reagan sleeping in her bed again, but also to sleep in my own bed again! Sitting up all night in a chair or attempting to sleep on the sofa definitely gets old after a while!!! I do have an exciting piece of news to share...we're going on a vacation!!! Grandma is taking us all to the Bahamas!!! When I say all, I mean, my mom (obviously), my sister, me, Mike, Reagan, and Reagan's nurse!!! Yep! We're all going! I can't wait. It's not til mid September, but we've actually been planning it for months now, so it finally seems to be getting within reach. We're renting a house in Nassau that has it's own infinity edge pool and private beach! It's going to be AWESOME!!! There's plenty of shaded areas for Reagan, very secluded, it should be really nice! Grandma has already bought Reagan more swimsuits, cover ups, and resort wear than we can even pack!!! We're all pretty excited about it. The one thing we still haven't done is get Reagan a passport. Grandma and I tried today to get a new passport photo of her with her short hair but it was just NOT happening!!! It's nearly impossible to get a straight-on photo of her with her eyes open (we might have to just hope they'll accept the one we took of her with her long pigtails). Hopefully this is something I can get taken care of this week, so I don't end up having to worry about doing it last minute!!

Saturday, July 23, 2011


Reagan finally slept last night!!! Not only did she sleep, but she slept in her bed!!! She slept all night and then most of the day as well. I went in at 4:30pm to check on her and she had hair in her face...turns out it was stuck to her face and when I tried to fix it, it woke her up! She woke all smiles though and has been a sweet, wonderful girl ever since. She was up for 5hrs or so before falling back to sleep. She definitely needs all this sleep. It was a particularly brutal bad streak this time around, it felt twice as long, because her last good streak was cut short by the stomach flu! Poor girl. I'm just hoping that this good streak is nice and long! Our girl deserves some good days.

Friday, July 22, 2011

Laughing and gagging

Reagan was up a lot again last night. Her nausea was much worse as well. Where she moves her lips around nonstop, like she's trying to manage the excess spit in her mouth. She'd doze off occasionally but overall, she was awake and she was nauseous! She kicked around all night in her brown chair, as I tried to sleep a little on the sofa beside her. It was another long night! On a good note, she's been laughing all day today. It's so cute! Her hands and feet are normal temperatures again. If it wasn't for the nonstop nausea (and quite a few really big throw ups), I would have considered today a "good" day. She's a trouper though...smiling and laughing through it all. Still not sleeping though. She really didn't take any naps at all today. Tonight she was looking pretty groggy but as soon as I tried to move, she woke back up again and now she's wide awake! I'm guessing tomorrow is going to be a sleepy day. I just hope tonight is a sleepy night!!!! Thank you for your prayers and please continue to keep Reagan's little friend Hudson in your prayers as well (he's still struggling in the ICU).

Thursday, July 21, 2011

Awake and gaggy

Reagan didn't sleep much at all last night. Mike stayed up with her from 12-2 (while I took a little nap) and she dozed off and on. When I got up with her at 2am, she was wide awake. She only dozed for a couple minutes (after having a big dirty diaper) and then that was it...she was WIDE awake the rest of the night and she's been wide eyed awake all day. She's been pretty gaggy today. She's only thrown up twice, but she's been making coughing/gagging noises off and on all day. She's still very tense and stressed and having lots of chorea but she's mellowed out a lot and hasn't been fussy at all. Her hands and feet have been ice cold all day, but tonight they are starting to go back to normal. Now we just have to get her sleeping again!!! I know I'm beyond tired...I can only imagine how she must feel. Prayers for sleep and good days to come are much appreciated!!!

Wednesday, July 20, 2011

Restless girl

Last night we got an unexpected surprise! At 10pm we had a knock on our front was the night nurse!!! I wasn't expecting her to work because she had worked the day shift for us on Monday when Reagan's regular nurse called in sick! And I'm actually more comfortable with her now that I've seen her interact with Reagan during the day (on one of her worst days). So that was nice, Mike and I got an uninterrupted night's sleep! Reagan was awake, asleep, awake, asleep all night it definitely would have been a long night for me! Reagan is still super restless, ice cold clammy hands and feet, very tense, and just has that stressed/zoned out look on her face. When you talk to her, she wrinkles up her eyebrows and gives you the stink eye! She's not a happy girl right now. She's also made the occasional gagging sound maybe we're close to being through with these nasty bad days!?!?! I did hear from the nursing agency this afternoon that Reagan's regular nurse (that comes Mon/Tue, Thurs/Fri) is still sick and headed to the ER! She's having some persisting cramping and stomach pains from the virus. I'm still feeling nauseous, but that's another story. I'm a little concerned about the sleep situation tonight. I'm sitting here falling asleep in my chair and Reagan hasn't dozed off for longer than 5 seconds and then she's hyper alert, kicking, kicking, kicking! I hope we get some sleep tonight! Please keep it in your prayers that she gets over this quickly and starts having good days again! Also...please keep Hudson in your prayers...his mom just posted tonight that he's in the ICU! Poor baby!!

Tuesday, July 19, 2011

Stressed and moany

Reagan didn't sleep well last night (she actually slept better before I attempted to go to bed). Mike and I didn't get to bed til after midnight and then Reagan woke less than an hour later fussing. She was up and down like that all night long. It was a long night. I was still feeling nauseous (could be leftover nausea from the weekend...could be the chopped beef sandwich I ate at 10pm last night) and getting up and down like that all night sure didn't help! She's still very stressed/moany today. Very zoned out. Super sweaty hands and feet. Lots of chorea...she's moving, moving, moving. We're SO ready for the bad days to be over and the good days to return. We feel like we were jipped last week with this nasty stomach virus interrupting her good streak! I'm not sure what tonight holds as far as sleep goes. Let's put it this way...I'm not holding my breath! Please continue to keep my stressed little one in your prayers!!

Monday, July 18, 2011

Bad days and migraines

Reagan fell asleep last night on Mike's lap, we thought she was OUT, but she woke up the second he laid her down in bed. I sat up with her and when she fell back asleep, I put her in her brown chair and covered her with her weighted blanket and she slept the entire night (I slept on the sofa beside her). She slept like a rock, I, on the other hand, tossed and turned all night long! Unfortunately, the good night's sleep didn't seem to help and Reagan woke this morning with a vengence! She was NOT a happy camper (definitely bad day #1)! Lots of screaming and crying. She'd cry and cry and cry...and then fall asleep. The first couple times she fell alseep, she took good long naps, after that the naps got shorter and shorter. Tonight, while Mike stayed home with Reagan, Grandma and I went to a UMDF meeting that included Chuck Mohan the CEO of the UMDF and Dr. Bruce Cohen (probably the most well-known and respected mitochondrial doctor out there). It was a very interesting meeting. One specific thing that interested me was a question a parent had about migraines and symptoms of migraines in children that can't really tell you what's going on. I had a friend just recently ask me if we thought maybe Reagan was having migraines, because of the excruciating pain she seems to be in during her bad cycles as well as the nausea she experiences. The more I think about it, the more I think we need to investigate this. They mentioned a few vitamin supplements that are commonly used to help with migraines that we could potentially try first. I definitely think this is something we need to discuss with Reagan's doctors. Well, it's time for me to get Reagan's formula ready and hopefully get some sleep tonight (she's been out since we got home from the meeting). Please keep my miserable little one in your prayers! (and my sister, who is headed to the ER right now because she thinks she's having an allergic reaction to a new medication she's taking...ironically, for migraines!)

Sunday, July 17, 2011

Killer stomach bug

We have had one sick house over here! Reagan had the worst of it on Friday, I had the worst of it on Saturday, and now Mike, my mom and Reagan's nurse are all feeling it today! Let me tell you...I have never felt sicker than I did yesterday. I was throwing up...a lot. I had the cold sweats, I had the hot sweats. I was so weak I could barely stand over the toilet! It was a LONG night. Mike took care of Reagan (who was very gaggy and fighting sleep) and I just laid in bed watching the clock. Today I'm super sore and achey. I feel like I've been run over by a truck! Now I know what my poor girl was going through Friday. I'm hoping Mike and my mom get by without having to go through what Reagan and I had to go through. Reagan finally pooped today (after two liquid glycerin suppositories). Poor girl, I'm sure that wasn't helping her upset stomach! She's been pretty cranky this afternoon (with cold clammy hands and feet off and on)...I think this stomach virus has brought on her bad days a little quicker than normal. I think we'll probably keep her on pedialyte over night and hopefully switch back over to formula tomorrow. It's been a rough couple days...please pray that this bad streak is short and mild (and that this stomach bug goes back where it came from)!!!

Saturday, July 16, 2011


So...turns out...the nausea wasn't random. Apparently she had a viral bug. Reagan threw up all night long. I was up all night with her and around 2am she spiked a 102.5 fever. Tylenol brought it down a bit and she seemed to feel better this morning. Then this afternoon, it hit me. I've been horribly sick too. Too sick to write any more. Please keep us in your prayers.

Friday, July 15, 2011

Random act of nausea

Reagan had another good night's sleep last night. She woke up this morning smiling and has been smiling ever since! Everything seemed to be going perfectly all day...she played with her ipad and toys, she was super cuddly and sweet, she did well for speech and ate bananas...but shortly after her speech therapist left, things started getting strange. She fell asleep in her brown chair, but I thought she seemed a little pale. Her nurse noticed she was a little spitty, so she tried laying her on the floor on her side, then out of no where she started throwing up (in her sleep)!!! And she kept doing it. We changed her position and got her more upright, but it didn't seem to matter. She'd be fast asleep and then all of sudden, start throwing up again! Finally, I decided to try draining the bananas out of her stomach. I drained some of it out, but apparently there was residual left over because it kept coming back up! I have NO clue what happened. I don't think I've ever seen her this nauseous on a "good" day. Maybe those bananas just didn't sit well on her stomach (although she's never had a problem with bananas), maybe something was wrong with them, maybe she's coming down with something...I don't know!! I don't know what to think. Her nurse thinks it might be related to the fact that she's seriously overdue for a bowel movement. I don't know. I've never seen her get nauseous because of that. Who knows?!?!? After a couple hours of too much throwing up, I tried giving her a dose of Zofran (which doesn't work with her usual nausea but we thought if it was something different, it might help). It seemed to help a little. She went almost two hours without throwing up, but it's back again. I'm really getting worried! I hope this passes, she's able to get some rest tonight, and wakes up feeling 100% tomorrow! Poor girl, through it all she's kept a smile on her face! She's such a sweet heart! Please keep her in your prayers!

Thursday, July 14, 2011

Another great day

Reagan slept well last night, going to bed fairly early and then sleeping through til after 8! She woke all smiles and has been as sweet as can be all day today. She had three therapies today, OT, Speech, and PT. She did well in all of them with the exception of speech (she fell asleep only a few minutes after her therapist got here). She's had another great day today. We took her for a walk this afternoon and stopped by to visit our neighbor that just adores her! He's 80yrs old and tells everyone about his bond with Reagan. He gets up close and talks directly to her...Reagan loves it. She's laying on the floor right now watching "the best of Elmo" and talking to the tv (no sign of sleepiness though)! She's such a doll!

Reagan and Uncle Johnny

Wednesday, July 13, 2011

Good day for my girl

Reagan has been a complete doll today. She woke me up at 6:30am this morning "talking" in her bed. She's been super smiley and very vocal all day today! Today we had a new nurse step in to fill our Wednesday spot (which always seems to be open). She's probably one of the best prospects they've sent out in quite a while. She has a very good attitude and seems to be on top of things, so I hope maybe she'll turn out to be a regular. Reagan couldn't have been better and was "on" all day. She was rolling all over the place, crunching in half (which was driving her OT crazy because she was trying to get her to sit up), & babbling up a storm! It was too cute! I just LOVE good days like these! Today I also got a very disturbing email from an ex-friend of mine. Can you imagine being friends with someone since 3rd grade and then having them dump on you during the most difficult part of your life?? Well, that's what she did. Right around the time that Reagan was diagnosed with infantile spasms, she vanished off the face of this earth. And now I find out it was because I was too much of a downer for her! Yup! My daughter has just been diagnosed with literally the most devastating seizure disorder there is, and I'm not positive enough for my friend! What's crazy, is that through this all, I feel that I really have been able to stay positive. Even when the doctors told us there was no way Reagan would ever be seizure free, I continued to pray, I continued to believe. I have never been one of those "why me" people...even though I'm sure I have the right to. I know Reagan has touched the lives of so many and I trust in God that there is a reason for all of this. But I do tell it like it is. Like for the blog, I recap our days (Reagan's days), for better or worse. I have wondered for a long time what had happened to my friend and how she could possibly desert me like she did...but I guess what I've learned today is that she never was my friend to begin with! I'm just thankful for the friends and family that I do have. Those that have stood by us through all the tough times and those that we've met along the way...thank you...your support means everything to us!!!

Tuesday, July 12, 2011


Well, last night Reagan finally slept!! Of course, it happened on the first night we had a night nurse (who ended up doing absolutely nothing all night long)!!! We knew this would happen with night nursing and that's part of the reason we've been hesitant to pursue it! I also wasn't crazy about the fact that the agency wanted to just send this lady over at 10pm without me ever meeting (or approving of her) beforehand. After I told them that was not going to happen, they made her come by at 6pm yesterday just to meet us. I wasn't in love with her (and I could tell she wasn't looking forward to working on a bad night) but she was better than some of the people they've been sending out. I don't think she'll work long term though, so I told the agency to keep looking! Reagan was nauseous up until when she fell asleep last night at 10:45pm. The nurse got here at 11 (Mike had told her she could come an hour late), to be honest, we were just happy that Reagan had already fallen asleep (I didn't want some stranger putting my girl to bed)! Reagan slept through til noon or so when she woke up for only a short while (smiling) and then fell back to sleep. She was up again tonight for maybe an hour or two before dozing back off again. She was precious when she was awake though! Very talkative and smiley! I'm so excited for the good days ahead (and sleep)!!!

Monday, July 11, 2011

Very nauseous with a side of fussy

Instead of things getting better, today things seemed to be getting worse! Last night she started getting fussy again. She's been pretty calm and quiet the last couple days and then out of no where, she's fussing and crying again (just before bedtime). I figured she was just tired. She dozed off some time around midnight and by the time I laid down in bed, she was already awake again and fussing. I got back up with her and she'd doze off but the second I tried to move her, she'd wake again crying! Finally around 2am I got her stay asleep and I was able to lay down, but an hour and a half later, she was back up and crying. She fell back to sleep around 5am and then I woke at 7 to find her already awake (but not crying). She seemed to be feeling better and was good all morning...even though she was very nauseous and gaggy (she had a couple really big throw ups). Then right around noon, she started crying again. It's just so hard to tell if she's crying because she's in pain or if she's crying because she's tired. She had a lot of gas this morning, so maybe her tummy was just hurting her...who knows. After a couple hours of crying, she finally settled down and has been good the rest of the afternoon. The nausea is a little out of control though. She's fighting nonstop to control the's like a faucet! It's making her retch constantly. Poor thing, she's trying to smile through it, I wish she'd just fall asleep so it could pass. Please keep her in your prayers!
(PS...Tonight we're giving night nursing a try. I'll let you know how that goes!)

Sunday, July 10, 2011

So spitty

Reagan didn't sleep much last night. Mike stayed up with her til 3am (she fell asleep in her brown chair around 2:30am) and then I woke at 6am and found her quiet but awake. She was up for the day (and hasn't taken a single nap)!! When I first got up with her, it seemed she might be turning a corner. She was laughing for me and everything. But as the day went on, she got more serious and the laughs were few and far between. She was SO spitty today and this morning she had a big (unexpected) foamy throw up when I was changing her diaper. I was able to drain some fluid from her g-button. She seems to be having more of an issue with the increased spit, than the actual nausea itself. Other than the one throw up, there hasn't been any retching or gagging or anything (which is awesome)! There was less nonstop chorea today, it seemed to come more in spurts. She was also a little more mellow (at times) today and we tried to give her some freedom from her arm restraints. Unfortunately, she took advantage of that and bit herself a couple times without breaking the skin but hard enough to make her cry. Although her hands and feet have continued to be cold and clammy, there was one point tonight that I felt them and they were finally a normal temperature (for the first time in days). I definitely think we're headed toward better days this week! I'm not sure whether tomorrow will be the day or Tuesday...but we're getting there and I can't wait to see my happy girl again!!! Thank you for your continued prayers!

Saturday, July 9, 2011


Reagan slept last night from 11:30-5:30am...not bad for a kid that doesn't sleep. It was in her brown chair, but sleep is sleep. She's been a lot more alert today. Less naps, lots more chorea. She's had a hard time sitting still for even a second. Her feet and hands are still cold and clammy and she's still trying to bite herself, but she hasn't been fussy or moany at all today. I definitely think things are improving. We've even gotten some laughs out of her today, but just a few here and there. She's certainly better than yesterday, but no nausea, so we're not out of the woods yet. It's after 10pm right now and I haven't seen many signs of sleepiness yet. Hopefully she'll be able to get some sleep tonight. We're looking into getting some nursing help 2 nights a week to help out a little with the sleepless nights (problem is, there's no way to predict which nights will be sleepless nights). Hopefully not tonight! On a sad note, another child with mitochondrial disorder lost her fight with this devastating disease yesterday. Eithene, who was not quite 5yrs old, had spent almost half her life in the hospital. Please keep Eithene's family in your prayers.

Friday, July 8, 2011

Still fussy

Today has been another yuck day for Miss Reagan. She slept fairly well. She fell asleep in the living room in her brown chair around 9:30pm. Mike stayed in there with her til midnight and then I moved to the sofa at midnight and slept beside her til 5am when she woke fussing. I picked her up and just held her and she eventually fell back asleep on me. She'd wake, fuss, and then fall asleep again. She's continued to do that off and on all day today. She's not sleeping as much as she did yesterday, but she's still pretty groggy. She's also very agitated! She's got a scowl on her face nonstop, she's very tense, and can't sit still. Constantly trying to get at those hands (so we have to keep both arm restraints on her at all times). Meanwhile those poor hands and feet are so clammy they're practically wet! Poor thing! She's not crying as much, more fussing than crying (although lay her down to change her diaper and she'll start crying for sure)! She fell asleep at 9:30pm tonight and seems to be sleeping pretty soundly...hopefully she'll get a decent night's sleep and feel a little better tomorrow. Baby steps. A couple more days and we'll have our happy girl back again. (Just finished the blog at 11:30 and she's already awake again!!!)

Thursday, July 7, 2011

The bad days begin...

Reagan fell asleep around 9pm last night on the floor of her therapy room and slept through til 7am!!! We were afraid to move her, so we just covered her up and put a monitor beside her. I couldn't believe it when I woke up around 3am and she was still asleep! She definitely needed it! She's been very fussy today. Still slightly sleepy, but when she's awake, she's moaning or crying! It's a yelling sort of cry too! She's biting and flailing...she is definitely not a happy camper! I guess we're in for several days of this now. On a good note, she's not missing any therapies because all of her therapists that usually come on Thurs/Fri are out of town right now. By the time everyone gets back and comes to see her next week, she should be back to her happy self again! I hate that she has to go through these bad days at all! She has the potential to be a happy girl (she's as good as gold on her good days), but every 4-7 days something makes her go crazy and become miserable! It just sucks! How I wish our girl could be happy all the time! I'm still hoping maybe she'll get into that Stanford study and see some dramatic improvement from this new experimental medication. I heard really promising results about a patient that had insomnia! Just getting Reagan to sleep on a regular basis, I'm sure would do wonders for her little body! Please keep all of this in your prayers! And keep it in your prayers that she has a short, mild bad streak this go round!

Wednesday, July 6, 2011

On edge

Reagan fell asleep last night and we put her in bed, but she was very restless. She kept moving around, but her eyes were still closed. We were in bed by 11:30 and then around 12:30 I woke up and heard her awake and moving around. I went in her room and she was wide awake. Instead of leaving her (and risking the chance that she would be awake all night long), I went ahead and sat up with her. It didn't seem like there was any chance of her falling back to sleep but finally around 3am, she dozed back off. I was afraid to move her, so I just laid her down in her brown chair in the living room and I laid on the sofa. She didn't seem to be sleeping very soundly but to my surprise she slept through til 8:15am! I'm just glad that she was able to get a good 5hrs consecutive sleep! Today hasn't been a great day for her...she's pretty much been on edge all day. This morning she was better, laughing her crazy laugh, but that's about it. This afternoon, she's been more fussy. She didn't like us talking amongst ourselves, she has had several crying outbursts (and clammy hands), and almost preferred being left alone (over being held). Tonight she fell asleep laying in her playroom by herself while her ipad "read" her the Grinch that Stole Christmas (my favorite). Poor thing. We're definitely in for some bad days ahead...please keep her in your prayers!!

Still looking happy during OT this morning...

Out cold tonight...

Tuesday, July 5, 2011

Still sweet

Reagan has been a sweetie again today. She didn't sleep much last night (if any), but she was content to lay in her bed all night. Mike tried laying with her and she did fall back to sleep (for a little while anyway) but she was very "twitchy" and just not sleeping soundly. We're working on weaning her off the Neurontin (which we were hoping would help with the bad days), I'm hoping once she gets off of that, the twitching will go away! She's been very snuggly today...I think it's partially from being tired. She only had one therapy today (several of her therapists are out this week), but she did well for it and was super sweet. She did freak out when Mike came home at lunch and started talking to her. Immediately the big lip came out and she started crying!! I don't know if he just startles her or what...but sometimes just the sound of his voice can set her off! She recovered and has been fine with Daddy all night. I really hope she can get some sleep tonight. Something tells me we are nearing the end of our good cycle. Tonight she's been a little cold and clammy...but she's still smiling! Boy do I love this girl! Below are a few pics of Bear laying beside her. He never does this (he's usually pretty scared of her)...

Monday, July 4, 2011

A great 4th...

I'm not positive how much Reagan slept last night. She fell asleep and I laid her in her bed, but when I went back 30min later to hook her up to her formula, she was already awake again. By the time we Mike and I got to bed, he said she had fallen back asleep! I have a feeling she was up and down a lot last night. When I got up at 6am to take my mom to the airport, Reagan was laying awake in her bed, kicking around nonstop! Grandma said that Reagan just wanted to see her before she left! When I got back from the airport, I found Reagan in bed with Daddy, wide awake! So much for going back to bed! She did get a little groggy just before 11am and took a little nap, but she was back up by noon! This afternoon we took a walk to get some more sun on those long legs and then tonight Reagan swang in her swing while Daddy grilled steaks on the back porch! It's been another great day with our smiley, happy little girl! Believe me, we are enjoying every minute of it!! Hope everyone had a great 4th!

Pictures from the fireworks show last night...

Posing in her Fourth of July outfit today...
Mommy trying to get a picture of her rolling girl...

On her way over...

All the way over...

Out for our walk...hands in the always!

Sunday, July 3, 2011

Busy day...wonderful girl!

Reagan slept like a rock again last night! She woke up this morning around 9:45am all smiles! We've had a busy day today. This morning we went out for a walk in the heat of the day...Grandma thinks Reagan needs more sun! Afterward we hung out in the house a while to cool down and then filled Reagan's "pool" up and let her go for a swim! She got to wear her pink bikini...that unfortunately came in a size too was still cute though! While "swimming" we decided to give her a bath (kill two birds with one stone)! Then we put her third outfit of the day on...see pink top and shoes below...this girl definitely has her Grandma and Aunt Amber's long legs (mommy is vertically challenged)! Then Grandma fed her some baby food...she's eating about 1.5oz at a problem (well, except for that uncoordinated tongue!). And tonight we went to watch fireworks at our country club (another outfit change...I'll post those pictures tomorrow). I think Reagan enjoyed rolling around outside on a blanket beforehand more than watching the fireworks themselves. We couldn't have asked for a better girl today! She's been absolutely wonderful all day and then tonight she drifted off to sleep in her Daddy's arms (smiling). Such a sweetie!!

Looking cool in her shades...

Impossible to take a picture of her...she's always moving!

Hand in the always!

Can't get her hand to her mouth around the neck ring!


Long legged girl!

Saturday, July 2, 2011

Just precious!

Reagan slept all night last night and woke up smiling this morning! She's been a doll all day today. My mom flew in this morning and I'm so glad that she's been here to see Reagan having such a great day! Reagan has been happy, smiley, talky and still a little drowsy today! She took a nice nap this afternoon and then fell asleep smiling snuggling with me and then with Daddy sometime around 10pm. She went on two walks today with Grandma and has been nothing but precious all day long. Definitely an answer to prayers!

Friday, July 1, 2011

Sweet Dreams

Reagan FINALLY slept last night!!! She was OUT all night long. She didn't wake til we transferred her to the car this morning at 6:45am for our drive to Texas Children's to get her gastric emptying scan done. She was wide awake the whole ride in, while we waited, and as they prepared her for the scan and gave her 4oz of formula (with a radioactive tracer in it) as a bolus through her g-tube!!! I was worried about the volume, the fact that it was given quickly (in less than 5min), and the fact that it was going into her stomach and she hasn't had that volume of liquid in her stomach since she stopped eating by mouth! At first she was sounding a little gurgly in her throat and I was worried that something might be coming back up...but by the time they moved her under the scanner...she was already out cold! She slept through the entire test and it's a good thing because there wasn't much room for her to move around under that thing (totally closterphobic)! They didn't do the longer version that the doctor requested just the 1.5hr test...apparently the GI doc and radiologist have an ongoing argument over the validity of the longer test...but the radiologist won this time! Reagan continued sleeping all the way home and for several hours after we got back! She woke up just long enough to see her speech therapist and then fell back asleep shortly thereafter while cuddling with Mommy. It's so nice to see her relaxed and finally able to sleep. Her hands and feet are back to normal temps. When she's awake, she's happy and smiling! Yeah! My girl is back!!! Sweet dreams!