Saturday, December 31, 2011

So sleepy

I think Reagan slept all night last night. I never heard her make a peep, but I admit, I was quite exhausted last night. Reagan woke up this morning still very smiley. She was a little feisty today, moving around, being vocal...but still precious. Sometime around noon she started to get sleepy. She made a few noises that might have been a little whiny, but I think she was just tired. She fell asleep and slept 45min or so in my lap, but the second I tried to lay her down, she was back awake again (and smiling). Then Mike picked her up and held her and she was back out in a matter of minutes! He held her for a while and then laid her down in her chair, where she continued to sleep most of the afternoon. She'd move around and stretch, but she never opened her eyes. I picked her up around 6pm and held her for a while and she still didn't wake up, so we finally moved her to her bed just before 8pm (I can hear her over the monitor making sucking noises in her sleep). I'm not sure why she's so sleepy, but if her body needs to sleep, I guess we need to let her sleep. I just hope she doesn't wake up at 2am and decide that it's time to get up!! Nothing exciting going on over here tonight for New Years (we don't get out much). Just watching bowl games & basketball like we've been doing all day long...

*Update*...Reagan woke up just after 9pm wide awake and raring to go! She was still super smiley, but definitely spunky and full of energy! That lasted until right before midnight when she finally fell back to sleep! Happy new year!!!

Friday, December 30, 2011

Beyond darling

Reagan has been an absolute doll all day today. She slept well last night and then woke up this morning smiling and giving us darling little laughs all day long! To say she's been precious would be an understatement. Oh...if we could have this girl everyday...we would be living the good life! I am SO thankful that we have had a really good month with her this month. Other than the super bad streak of nausea she had the first few days for the month, December has been a really great month for her. Let's pray that it continues!! She had OT and speech today, it's always nice when they get to work with her on her good days. Head control was lacking...but it was less of a strength issue and more because she wanted to be in the crunch and roll position. She was not at all groggy today like she was yesterday. She was very bright-eyed and energetic today. Super darling. We had dinner plans tonight at the home of a guy Mike works with (who is leaving to go to work in Singapore). Since we didn't have anyone to watch Reagan, we took her with us, and she couldn't possibly have been any better than she was. She was happy to just sit on our laps or in her stroller where she smiled and giggled the whole time. Of course now it's 11pm and I'm way behind on her meds and she's not looking even the slightest bit tired! Oh well...I'm just happy that she's happy!!! Thank you all for your prayers!!!

Thursday, December 29, 2011

Snuggly and sweet

Reagan has been a good girl again today. She slept pretty well. Mike had to get up and lay down with her for a little while because she was awake and squirming around, but she fell back to sleep and then slept through til just after 8am. She's been more smiley today but still groggy. She fell asleep and missed her only therapy today. When awake she was snuggly and sweet. Very laid back and mellow. Content to be held, content to lay on the floor and chew on her fingers, just all around content! It's so nice to see her already feeling better. The last few days were so mildly off, you could hardly call this a bad streak. I sure hope this continues. I would love to start the new year with an extra long good streak again. We do have some important things coming up. We're going back to Stanford for the second EPI-743 follow up Jan 11-14. We could definitely use a happy, healthy girl for that trip! Please keep that in your prayers.

Wednesday, December 28, 2011

Good "off" day

Reagan has been surprisingly good today. She slept the whole night through last night and then woke up this morning in a fairly decent mood. I wouldn't say she's been happy, but she has been content and a little sleepy. She fell asleep around 10am and took a decent nap. I'm not sure why she was so sleepy...we never heard her make a peep all night (although she was a little restless when we first put her down...I have a feeling she did wake up here and there and just went back to sleep on her own). She hasn't been fussy or whiny at all today. And other than being sleepy and just a little out of it, she's been good (she did fall asleep during speech). We've gotten some laughs and even a few smiles out of her. You can tell she's still not feeling quite herself, but she's doing her best to be a good girl, so we're very appreciative! We really couldn't ask for a much better "off" day. Hopefully we continue to see improvement from here on out. We're ready to be done with these bad days for good! Thank you for your prayers!

Tuesday, December 27, 2011

Off days

Reagan slept surprisingly well last night. Mike put her on a pillow just to elevate her head a little because she was acting gaggy right before we laid her down. I turned on her humidifier to try to keep her from drying out from the heat. She slept like a rock. She didn't wake up until right around 8:15am. She wasn't happy but she wasn't fussing either. She's been a very serious girl today. No smiles whatsoever. We have gotten some laughs but they were a little crazy and we were afraid to encourage her and have them develop into tears! She slept through OT and was quite fussy for her speech therapist. Maybe she was just tired. She's been a little groggy all day today. Her hands have been cold & clammy off and on and tonight she was acting gaggy again (I drained some fluid from her g-tube)...she's definitely feeling "off" but she's trying to be a good girl. Grandma left this I'm sure she wasn't happy about that. My Dad and Stepmother came to stay the night with us this afternoon. Too bad they missed all of the good days Reagan's been having. Hopefully these off/bad days won't last too long. No nurse hopefully we get some sleep tonight!!! Please keep our girl in your prayers!!!

Monday, December 26, 2011

A little fussy

Reagan was a bit of a turkey last night. She woke up around 2:45am fussing (which is never a good sign). Mike tried laying down with her but she wasn't getting any better, so I just got up with her. I held her for a while and she continued to fuss, but she was working on a dirty diaper, so maybe it was just tummy troubles (it has been days since she had a bowel movement) . After changing her diaper, she fell back to sleep about 15min later. Every now and then I would hear a random fuss, but when I would look at the monitor, she was already back to sleep. She actually slept through til 9am. She did not wake happy though. She was on edge and very fussy this morning...especially for me! I don't know if her tummy was still hurting her or what, but she was NOT happy for her mommy, that's for sure. Thankfully she was better for Daddy and Grandma. It wasn't until this afternoon that she finally warmed up to me again. Her mood was much improved this afternoon. We got some giggles out of her and she even played with some of her new toys. Now that we're nearing bedtime, she seems to be getting a little agitated/crazy again. Maybe she's just tired...she keeps dozing off and then jolting back awake again. Hopefully she sleeps tonight. Last night was a little grueling considering I didn't even get to bed til 1pm.

Sunday, December 25, 2011

Merry Christmas!

Merry Christmas everyone! We all went to bed very late last night and then Reagan woke up around 3am and was talking to herself. She wasn't falling back asleep so Mike went and laid down with her. She fought hard, but finally she fell asleep laying beside her Daddy. We slept in til around 8:15am when Reagan woke up. She woke happy and has been a good girl all day today. She quietly sat in her chair for 3 hrs while we sorted through all of the presents (Grandma tends to go a little overboard). Reagan got all kinds of great gifts. Lots of clothes, several switch activated toys, a fijit, and loads of other stuff! Even Ryan, who is not even born yet, got lots of gifts!!! The best gift of all is that our girl had a good day. I wouldn't say she was overly smiley or happy, but she was content and gave us some sweet laughs here and there. Her hands have been a little clammy today and Mike swears he can smell the "bad smell" on her today, but hopefully she'll skim over the bad days again and only have some mildly off days this time around. Thank you for your continued prayers for our girl and we wish you all very merry Christmas!!

Saturday, December 24, 2011

Twas the night before Christmas...

I think Reagan slept through the night last night...but I also think I remember hearing babbling off and on. This morning I found her laying sideways in her bed, covers kicked off her legs, and wide awake! She woke up a little earlier this morning...maybe she was excited about Christmas eve?!?! She's been a darling girl today. Still very energetic, lots of babbling and squealing, lots of smiles. We cooked all afternoon and she was happy to just sit and watch us do our thing. Tonight we had dinner with my mom, my sister, and our neighbor. Not a lot of people, but we had a good time. We're all extremely stuffed and exhausted. Totally ready to go to bed...that is all of us, but Reagan. It's 11:40pm and she's still going strong. Moving, moving, moving. Hopefully clonidine will do the trick tonight because we all need to get some sleep!!! Wishing everyone a very merry Christmas!!!!

Friday, December 23, 2011

Full of energy

Reagan fell asleep super early yesterday and then stayed sleep and didn't wake up til this morning! I'm not sure what that was about. She woke up this morning a happy girl, so that's great. She's been very smiley today. Lots of vocalizations and squeals. She's also been very rolly. She'd wiggle her way down her wedge on the floor and then roll all the way over to her tummy. Lots of energy today...that's for sure. Today it was just her, me, and Grandma. Her nurse is off today and Monday. She only had one therapy today, OT, and she did great. It would figure that when she's having good days all of her therapies would be canceled because of the holidays! I'm sure she doesn't mind though. Things will be back into full swing again before we know it. For now, she's probably happy to just enjoy her time with Grandma (and Aunt Amber tomorrow). Hopefully we're all in for another good night's sleep tonight...

Thursday, December 22, 2011

Smiley and a little sleepy

Reagan slept well again last night. She woke up this morning around 9am, about 30min before Grandma arrived. She was all smiles...and very happy to see her Grandma. She's been a good girl all day today. Speech was her only therapy again, but she seemed to enjoy it. She spent most of the day watching the Grinch (over and over...she is her mommy's girl) and listening to Christmas music. I spent most of my day straightening up the house and baking more cookies. Tonight Reagan was being super sweet but yawning a lot. The next thing I knew, she was fast asleep in my arms at 6:30pm. Mike put her in her bed but she was really restless and about an hour later she seemed to be waking up. He went in and picked her back up but she was only partially awake. Another 15min in my arms and she was out cold again. I think she just likes to snuggle. As of now she's back in her bed, but 9pm is pretty early for her to be down for the night. We'll see how it all works out. I'm still keeping my hopes up for a smiley/happy Christmas weekend for our girl. Please keep that in your prayers...

Here's a cute pic of her and my sister last Christmas!

Wednesday, December 21, 2011

All smiles

Reagan has been a great girl today. She slept all night last night and then woke this morning smiling from ear to ear. She's been all smiles, all day. She had speech at noon today and although she wasn't vocal, she was definitely interacting with her therapist. She actually didn't get vocal til tonight. For some reason, she always seems to do it when I pick her up. She likes talking to her mommy, I guess. It was so good to see her completely and totally happy. I feel like it's been a while since we've seen her that way. I baked cookies today and this afternoon we went to our neighbors houses and delivered them. Reagan came along and we talked to each of the neighbors for a bit. Everyone was very encouraged to see her smiling so much. We are encouraged to see her smiling so much!! Tomorrow Grandma is driving in and she'll be her til the day after Christmas! I know someone who is going to be super excited to see her! We just saw her this weekend, but Reagan wasn't feeling quite herself. Hopefully these smiles stay with us through Christmas...and through the new year!!

Tuesday, December 20, 2011

Feeling better?

Reagan slept much more soundly last night. As far as I know, she never woke up. I had to be at the doctors office early this morning for a 3hr glucose test (I was 2 above normal in my 1hr test) I had to leave before my princess woke up. From what I'm told, she woke up around 7:45am and seemed to be much improved. She was smiley and laughing all morning. She had back to back to back therapies...OT then speech then PT, and did well for all of them. Her PT put her in her stander before she left and about 20min into it we heard a little something in her voice. She was starting to get a little whiny. A few times she was laughing and sounded like she might start crying...but we managed to snap her out of it. She may have just been a little tired from all of the activity. Who knows. I know I'm exhausted. I think I'm crashing after all of that sugar this morning. I've got a killer hopefully Reagan behaves herself and sleeps tonight. She actually seems to be feeling better. She had a big dirty diaper tonight (she had three yesterday) and she's been all smiles ever since (so maybe it was just tummy problems). Even though she was smiley throughout the day, she was always a little on edge. Tonight that's completely gone and she's been totally at ease and just all around sweet and precious. Hopefully that's here to stay.

Monday, December 19, 2011

Ready for good days...

Reagan woke up several times last night but we never had to pick her up and she eventually went back to sleep in her bed and got a decent night's sleep. Of course, we had to get up and lay in bed with her (Mike the first time and me the second)...she was very restless but holding her arms down seemed to help her calm down and get back to sleep. She woke up in a decent mood. Still not smiley, but not at all fussy either. No therapies though...the next two weeks will be pretty slow with only OT and Speech. School is out so she won't have any of those visits and her PT will come tomorrow but then will be out until after the 1st. Hopefully Reagan's mood will continue to improve as we get closer to Christmas. She's actually been a good girl all day today. We had to take her in for her 8 week EPI-743 bloodwork and she didn't even make a peep when the lady had to stick her three times!!! Poor thing! The first time she hit the vein but the needle popped back out when she was reaching for the tube! Then she tried her hand, even though I told her that was a lost cause, she hit the vein but immediately lost it and then fished around for a while (and left a horrible bruise). She went back to the good vein and finally got it. Ugh. Reagan was so good through it all. She's been pretty mellow all day. Giving us little laughs here and there, but still pretty serious. Hands and feet are still cold and clammy. Tonight she coughed a couple times and then 10min later she threw up. Hopefully we're almost done with these off/bad days. I'm ready to see a smile again!!! Thank you for your continued prayers!

Sunday, December 18, 2011

Off but home

Reagan slept fairly well last night. She was a little restless and I had to keep getting up to put her weighted blanket back over her arm to keep her still (and keep her from whacking herself in the head)...but she pretty much slept through til 8:30am. She woke up this morning still feeling off. No smiles whatsoever...she's been very serious all day. She also was a little fussy this morning. It seemed like it was me...every time I'd pick her up, she'd start crying! I don't know. Maybe she was just having some tummy pains or something, but it still hurt my feelings a little. It also worried me about how she was going to be on our long drive back (with no one but me sitting beside her to keep her calm). She did well though. We left Denton around 1:30pm and got home around 5:45pm...Reagan was good the entire time. I had to hold her arm down to keep it out of her hair and out of her mouth (and she kept arching and stiffening up here and there), but otherwise she was perfect. She's been off like this for a while now but we've been very lucky that she's kept the crying to a minimum, she's actually slept really well, & she hasn't been nauseous knock on wood (all answers to prayers)!!! I hate that she's still off and not smiling, but the longer this lasts, the more likely she is to have a good Christmas! Sad but true. Please keep our sweet girl in your prayers!!!

Here's the pic of her asleep at the hotel Friday night. She was all wrapped up in that blanket and slept pretty well...

Saturday, December 17, 2011

Dallas photoshoot

Yesterday we drove in to Dallas in order to surprise my mother with a family photoshoot this morning (she was bitter that we never took the family pic she wanted in the Bahamas). We've been planning it for weeks. Originally we were going to do it two weeks ago, but Reagan was having that horrible bad streak with the horrendous we put it off. Then, last weekend my sister's hotel was completely booked solid and she couldn't get us a we decided to do it this weekend. We knew Reagan wasn't going to be on her A game, but we didn't really have a choice as this was supposed to be a birthday present for my mom (whose birthday was Nov 30th) and now we were already to the last weekend before Christmas! Everything went better than expected with the drive yesterday, the traffic leaving Houston was horrible, but at least we didn't have any major meltdowns from Miss Reagan. She actually slept really well in the hotel last night. She didn't wake up til right around 6:45am, but she was back asleep by 7! I stayed up and she continued to sleep, waking off and on but staying pretty much asleep til 11:15am when we had to get her dressed to leave (I have a cute pic of her sleeping I'll post tomorrow). Let's just say, she did NOT wake happy! There was lots of crying and I was beginning to get a little worried. Once her clothes were on, Mike was able to pick her up and calm her down, and she was fine by the time we left. We got to the photography studio and my sister was waiting. Her boyfriend showed up 10min or so later with my mom, who was completely and totally shocked to see us sitting there! The portraits through this studio are gorgeous...and I'm sure they were able to get enough frames of us to cut and paste good shots of us into the final pic! Reagan didn't crack a smile, but she also didn't fuss or cry, so I don't think we could have asked for much more from her (not today anyway). We checked out of the hotel and then followed my mom back to her house in Denton. She's lived here now for over 2 yrs and this is the first time we've been to see her here (she always comes to see us). We went out to lunch and then came back to her house to relax. Reagan started getting fussy around 6pm and did give us a little bit of grief, thrashing around and having periods of screaming/crying. She's very tired, but so restless...I'm not sure how sleep will go tonight, but I sure hope it happens! Please continue to keep her in your prayers. Her body definitely wants to go into a full blown bad streak, but she seems to be fighting it off for now.

Friday, December 16, 2011

Drama free

Much to our amazement, Reagan actually got a decent night's sleep last night! She fell asleep on her own around 10:30pm and woke back up around 1:30am fussing. After I picked her up, she really let me have it! She was fussing and crying nonstop for me. After about an hour of that, Mike came in and tried soothing her. He laid her on his chest and I'm not kidding 5min later, she was fast asleep! (the same child that was screaming crying for me not 5 min earlier) Then she slept through til 8:15am. She kept moving around and fussing, I swore she was going to wake up sooner. I actually got up at 7 because I was sure she was waking up! Nope. When she woke up, she wasn't smiley, but she wasn't fussy either. She was a little sensitive, but she was actually pretty good all morning. She was still doing the crazy laughs, but we were trying not to encourage it. It wasn't until this afternoon that we had a few instances of fussing. It never developed into full blown crying...for that we are very thankful. Tonight she was a good girl and started getting sleepy around 11:15pm. I'm hoping for more sleep tonight and another drama free day tomorrow! Please continue to keep her in your prayers!

Thursday, December 15, 2011

Pray the bad days away

Reagan slept well again last night. She woke up around 8:15am smiling...which is good because she had a jam packed schedule today. She started off with vision, then school, then the lady from the seating company came by to talk about options for a new stander (and SleepSafe bed), & then PT!! Busy, busy. She was a good girl most of the day. This afternoon she wasn't super smiley, but she'd smile for mommy (and talk to mommy), so that's encouraging. Then tonight, right as our nurse was leaving and Daddy was getting home, she started getting fussy. The tears turned on and she was definitely upset. We were supposed to go to Bible study, but this all started up right as we were about to leave, so we decided it was best just to sit this one out. After she finally calmed down, she was very vocal...making laughing sort of sounds almost nonstop, but always right on the verge of tears. We saw the tears a few more times and then right around 10:30pm, she fell asleep sitting in her chair. Mike carried her off to bed and she stayed asleep, although I'm not too sure how long that will last. She's been pretty wired all night tonight. We'll see. The crazy laughing is usually a sign of impending bad days...although I hope this time I'm wrong. Maybe we could pray the bad days away?!?! Please keep it in your prayers that she turns this around and somehow avoids the bad days this go round. I'm still hoping for another month long streak of good days! It's happened before, it can happen again...right?!?! Please keep our girl in your prayers!!!

Wednesday, December 14, 2011

Still smiling

Reagan slept well last night. This morning around 7:15am I looked at the monitor and saw her moving her legs around. I walked in and saw her stretching (turned sideways in her bed with her head up against the wood) but her eyes were still closed. Then Mike walked in and started talking to her and those eyes popped open and she was all smiles! She's been a good girl again today. Still moving a lot, but most importantly still smiling! She's also been pretty vocal today. She even performed for her speech therapist and was vocalizing as she sang to her! Very cute. This afternoon she got a little sleepy and took a little 30min nap...but that's it. Otherwise she's been awake and spunky! Her hands (specifically her left hand) has been in her mouth a lot today. Tonight I looked at it and she had little red tooth marks all over it! I had to put her arm restraint on for a little while just to give her poor fingers a rest. She's not trying to bite them, but she is overdoing with the chewing a little! Please keep it in your prayers that she can hang on and continue having good least for a few more days!

Tuesday, December 13, 2011


Reagan slept well again last night and then woke up this morning smiling! I can't get enough of that! She was a good girl today but she was moving, moving, moving non-stop. There has definitely been an increase in chorea...legs kicking, arms moving, hands in her hair and in her mouth, crunching forward. Her mood, though, has been great. Super sweet, super smiley. She had OT this morning and then "school" right afterward. She was good for both. She did have a random throw up this morning, but was fine afterward, so I'm not sure what that was about. I hope these good days continue! We need a nice long stretch this time around. Another month and a half of good days would be nice! That's what I want for Christmas!!! Today I had a doctor's appt for the baby. Now that I'm in my 3rd trimester (27 1/2 weeks), I have to go every two weeks now. Everything is going well. The baby has been kicking like crazy. Definitely moving a lot more than Reagan did. I had to do my one hour glucose test today (to check for gestational diabetes). Hopefully it comes back fine or Christmas is not going to be fun for this pregnant woman craving sweets! Right now I'm measuring 2 weeks ahead...which does make me a little nervous because Mike was just short of 10lbs at birth! My doctor said if I'm still measuring ahead as we get closer, they'll do another ultrasound to try to get a better idea on the size of the baby. Other than feeling humongous (and in my opinion looking like I'm already 9months along), I feel fine. No more nausea. I do have a hard time finding a good position to sleep and when I get up in the morning I'm always quite achy in my back. But overall...I'm good. I definitely appreciate continued prayers for this baby!!! We need an easy one this time around!!!

Monday, December 12, 2011

Best Santa pic yet!

Reagan slept last her bed!!! Finally! And she slept well. She woke up this morning around 8:30am and she was all smiles again. That was our cue to get her in to see Santa today! She had speech therapy at 11, so we had to wait til that was over, but we got her dressed and out the door as quick as possible to catch Santa before he took his lunch break (I mean, had to go feed his reindeer)! We made it just in time and were able to get a few cute pics with Santa (which now seems to cost a small fortune)!! Mike thinks this is her cutest Santa pic yet. I have to agree. She was super smiley, but it was hard to get those eyes open. This might be the only pic they got with her eyes open, and it just happened to also be the cutest! Reagan fell asleep in the car on the way back from the mall and then took a nice 2hr nap! She woke just in time for her second speech of the day (through the school system). I'm not sure how awake she was for that. She was happy though, so we have to take advantage of these happy days! She dozed off again around 7pm but then woke up an hour or so later and was WIDE awake. So much so, we were beginning to wonder if she'd ever go back to sleep. Clonidine did the trick...but now we have to see if we can get her to her bed and keep her asleep. Wish us luck!!

I told Santa to hold her arms, otherwise they'd be in her mouth and in her hair!!

Sunday, December 11, 2011


Last night Reagan fell asleep and we were hopeful she might actually sleep in her own bed. She only made it 30min or so before she woke up fussing. I tried to calm her down without picking her up, but it wasn't working. I brought her into the living room and put her in her chair and immediately she started dozing back off. She slept like a rock in that chair and didn't wake up til 9:15am this morning! She woke smiling and has been super smiley all day today. It definitely seems that she's turned a corner. Today she was very laid back and happy all day. She did take a small nap around 11:30 but it didn't last long. Other than that, she's been wide awake and very alert all day. Tonight she started getting sleepy around 10:45pm, so Mike put her in her bed but she was back awake only a few minutes later. Right now we're just leaving her in there to see if she'll go back to sleep on her own. Sometimes that works and sometimes it doesn't. I really want her to be able to sleep in her bed tonight, so hopefully she cooperates!!! Thank you for your prayers!!!

Saturday, December 10, 2011

Still off

I'm not sure how much Reagan actually slept last night. She fell asleep in her chair but then woke up fussing a couple hours later. She went back to sleep but woke a few more times through the night. I got up this morning around 8 when I heard her rustling around and she was wide awake. It's possible she had been up for a while. She was stressed but calm at first but around 10:30am or so she really started getting fussy! She'd cry and cry and then be OK for a bit and then cry and cry. I gave her some tylenol and again it seemed to help. When she wasn't crying and being extremely pathetic, she was actually quite calm and sweet. Her hands and feet would go from being ice cold and clammy to warm and completely normal. Things are definitely still off with her but overall this has been a fairly mild bad streak and for that we are thankful. Hopefully in the next few days we'll see the return of our happy, smiley girl...the one that sleeps through the night!

Friday, December 9, 2011

Not so bad day

It's been a weird day for Reagan. Last night was similar to the night before in that she didn't last long in her bed. Maybe an hour at the most. I picked her up and sat up with her for a bit and was able to get her back to sleep in her chair. I put a monitor right beside her and then I laid down in my bed to get some sleep. I woke up several times and got up to check her, but she was fast asleep. Finally around 5am or so she started moving around a little more, so I got up and laid on the sofa beside her. She stayed asleep and slept in til around 8:30am. To my surprise, she woke up fairly happy. She was actually pretty content all day with the occasional smile and laugh. We took her in to the pediatrician's office around noon to get cathed. She hadn't had a wet diaper since first thing in the morning....then as we sat in the office, she went. I thought we had ruined our chances at getting a clean specimen, but the nurse was able to cath her and get a few drops. She tested it in the office and it looked good. She was able to send the other drop or two off to get cultured (so I guess we'll find out about that next week). This afternoon she had OT, which she did great for, and she spent the rest of the afternoon just being precious. I thought maybe we were in the clear and headed for good days. Tonight, though, was another story! Right around the time that Mike got home, Reagan really started getting fussy. We had to put her arm restraint on to keep her from biting herself (she was even biting at my arm)! She cried for a while and then eventually calmed down just sitting in her chair. I'm not really sure what that was about, but I hope we don't see that again. I'm pretty exhausted. I'm not sure what tonight holds for us, but I sure hope it's sleep!

Thursday, December 8, 2011

Bad streak or UTI...that is the question

Reagan was up a lot last night. She slept no more than an hour in her own bed, then I sat up with her. She was NOT happy. There were lots of tears! She dozed off for about 30min in my arms but the second I moved an inch, she was back awake... crying! Finally around 3:30am I put her in her chair and she calmed down and fell asleep. I laid on the sofa beside her. Every now and then she'd move around a bit, but she stayed asleep. She woke around 7:30am but she was in a much better mood. By better, I mean not crying/fussing. She was by no means happy or smiley today. We got laughs here and there, but they were crazy laughs (that always sounded like they could end in tears). She somehow made it through vision/OT, school, & PT, she wasn't that into it, but she suffered through. This afternoon she got a little fussy so we gave her some Tylenol (it seemed to help last night) and she calmed back down. I spoke to her pediatrician today...apparently her urine sample (that was taken as part of her routine EPI-743 bloodwork) showed something that might indicate a UTI. It wasn't a "clean" sample (we just bagged her), so they want us to bring her in tomorrow to get cathed. Oh joy. I don't think it has anything to do with how she's been lately, but who knows. I'd rather be safe than we'll just take her in. I'm hoping maybe she'll get some sleep tonight, otherwise this is going to be one tired mommy tomorrow!! Please continue to keep her in your prayers!!

Wednesday, December 7, 2011


Reagan was good...for most of the day anyway. She slept well last night and woke around 9:30am this morning. She was content. Not smiley anymore, but she was good. Then this afternoon...all of a sudden...she started getting fussy. She'd cry out for a bit (tears streaming), then she'd be OK. I picked her up and held her in what I call "the poop position" and she did just that. It was a good consistency (not too loose not to hard), but it still seemed to bother her. Well, something was bothering her (we never really know what). She fell asleep for a little bit but then woke just as weepy as before. Then tonight she had another stinky diaper (two in one day is definitely not like her). The off and on fussing has continued all night. I have a feeling I'm in for a looooong night...that is, if the clonidine doesn't do the trick. We could definitely use some prayers for her. She had such a rotten week last week, we were really hoping to skip this junk this week! A quick recovery would be nice. As well as less nausea and more sleep.

Tuesday, December 6, 2011


Reagan has been a sweet girl again today. Not super smiley like yesterday, but still very sweet. And a little sleepy. She actually slept all night last night and then didn't wake up til 11:40am today! I'm just glad that her little body is finally catching up on sleep! Lord knows she needs it. I'm still hoping for an extra long stretch of good days this time around. She needs that...we need that! Today she had OT, "school", and PT (and ended with an hour in the stander). That's a lot of therapy but she needed it because she missed most of her therapy last week because of the bad streak. This afternoon we gave her a bath and put her in her new elf pjs and tried to get a picture of her in front of the Christmas tree. Not a lot of luck. She's a mover. Legs kicking around, hands in her mouth, hands in her hair. Not many smiles either. Oh well. She's still a cutie!!

Monday, December 5, 2011

Sweet again

Reagan has been a sweet girl again today. She slept all night last night despite her stupid pump going off 3 different times (it kept getting kinked)! She woke smiling around 8:15am and has been such a good girl all day. She had speech this morning and started getting groggy toward the end of it. She took a nice 2hr nap from 12:15-2:15pm. She probably would have slept much longer (she was out cold), but we had to take her in to get her bloodwork for the EPI-743 study. This time they also needed a urine specimen, which we collected at home ahead of time (we just happened to have a urine bag and cup laying around). We have to take her all the way to the hospital for these blood draws because they want a VBG (venous blood gas) and no one does those except for the hospital. It's a real pain in the butt. We have to drive into Houston, valet park ($15 flat rate) and then go through admissions which always requires a lot of waiting...just to go to the outpatient lab. If that wasn't enough, the outpatient lab has been closed down ever since we started these draws, so we always get the run around about where we actually need to go. The last time they sent us to the Liver Center. This time they wanted to send us to the ER, but I told them there was no way I was taking my immune compromised child to the ER! Instead they had someone come meet us at the Liver Center (apparently their blood person had already left for the day), but this lady immediately told me that she was not able to draw a VBG (apparently you have to be a RN or a doctor to do this)! So we made several calls and finally they decided that she could draw it in a tube and then rush it over to the lab to be analyzed (we'll see if we actually get results from this). Reagan was such a good girl through it all. The lady didn't even have a small enough butterfly needle and had to really dig around in Reagan's arm for a while before finally finding the vein (I was having to hold her arm and found myself getting a little light headed during this part). She took a lot of blood and Reagan never even made a peep. She's such a trouper! Boy do we love this girl!!!

Sunday, December 4, 2011

Smiley and sweet

Reagan slept well again last night and woke smiling again this morning! She's been super sweet all day today. Very smiley, very vocal. There were a few times we heard something that sounded borderline whiny, but overall she was a very happy girl today. I did notice tonight that she has a big bruise on her it's possible she bit down too hard on it at some point. Her hands have been in her mouth all day. Usually it was both her thumb and her pointer finger. She did get a little chokey at times, but it was usually related to either fingers in her mouth or laying down and not handling her spit well. Not a lot of excitement today. Grandma had to leave this morning because her dog got sick all over my sisters apartment! A cool front came through so the weather was pretty yucky this afternoon. Reagan watched as I finished decorating the Christmas tree. We finally have decorations inside and all I have to do is find something to do with these boxes that housed all of the decorations! Right now our house is still a mess! Thankfully we've gotten two good night's of sleep and hopefully we'll get another tonight. We're still a little worn out after last week. Thanks again for all of the prayers for our girl! Please keep them coming...we need a long good streak this time around!!

Saturday, December 3, 2011

Good girl

I'm beyond happy to report that not only did Reagan get a full night's sleep last night, but she woke up this morning smiling and no longer nauseous!!! Prayers answered...that's for sure. Last night we really didn't have high hopes that things would turn out this way. She was dripping spit and constantly making gagging faces. But Mike picked her up and put her on her tummy on his chest and out she went! She not only made it into her bed without waking up, but she continued sleeping til 9am this morning! I walked in her room and she was just laying there quietly, eyes wide open. She started smiling when she heard my voice and her grandma was here to greet her, so I'm sure she was happy about that! She's been a good girl all day today. Very laid back. Smiley with the occasional vocalization. She is still a little spitty and has choked a few times on her spit (but nothing compared to yesterday). All in all, she's good. I'm hoping and praying for an extra long good streak this time around. It's going to take us a while to recover from last week's hell week. Thanks again for all the prayers for our little one. She's a good girl that has been plagued with bad days lately.

Friday, December 2, 2011

Another nauseous day

Thank you all for your prayers and encouragement. I wish I had good news to report today but Reagan was up all night again last night. There was one period, from 2:15am-3:45am, when she actually got some sleep. Only an hour and a half, but that's better than nothing. I wasn't sure if she'd actually stay asleep so I waited an hour and then I finally laid down, but less than 30min later she was back awake. The nausea and gagging/retching has continued all day as well. She's super spitty...dripping like a faucet...and that's making matters worse too. It just pools up in her mouth and then chokes her! I'm wondering if we need to get something to have on hand to dry up her secretions on days like this (like Robinul). We did take her to the pediatrician's office this morning. They checked her ears, which were fine. And then they checked her throat, which was of course red. The 5min strep test came back negative, but they also took a swab to culture and decided to start her on an increased dose of Amoxicillin just in case it comes back positive. When we got home we gave her a dose of tylenol (to try to decrease any inflammation in her throat) and that seemed to help a little. She's just SO spitty. She soaks a bib in only a few minutes. Changing her diaper is almost impossible because she chokes the second you lay her down (heck, she chokes sitting up)! I'm just praying she's going to be better soon. This bad streak has already gone on too long. The only good thing is that she never went into the nonstop screaming, crying phase this time...but the nausea phase was out of control! This is so emotionally and physically exhausting...I don't think we can take much more. Please say lots of prayers for her to recover (and sleep)...ASAP!

Thursday, December 1, 2011

Horrible day/night

Oh...I'm stressed! I have officially reached my breaking point. Reagan is still in a horrible place and this momma is NOT handling it well. I can't even look at her without breaking into tears right now. She was up the entire night last night...gagging, retching, and vomiting nonstop (and has continued all day)! She's going on 72hrs with no sleep and I, for one, am sick of watching her suffer like this. Her body wants to sleep (and she'll doze off for a few seconds at a time) but something just won't allow her to stay asleep. Why not take her to the hospital?!?! Because we've been there, done that. We spent an entire month there 2 yrs ago and they weren't able to do ONE thing to help her. She's resistant to nausea medications...she's resistant to pain medications. No one knows why her body goes through these cycles but ever since it started the only thing we could do is wait it out. So we sit here, watching her 24/7, unable to help her in any way. Feeling completely helpless and hopeless. I honestly thought it would be over by now. I can't believe this streak has continued on for as long as it has. These bad days are by far the worst bad days she's had since...well, since I don't even know when. I feel like we've been transplanted back to a time 2yrs ago. A horrible time. All I can do is sit back and cry for my girl. Tomorrow I'll take her to the pediatrician...hoping she has something easy...something normal, like strep throat...that would make this drag on the way it has. Mike watched Reagan while I took the first sleeping shift tonight (from 10-1). Since then I've been sitting up with her...crying. It's just so hard to watch. Kind of like I'm sitting here watching her suffer through one of the nine circles of hell. I know I sound dramatic right now, and maybe that's in part because of the sleep deprivation, but this is so painful. So I ask that you would keep praying. Pray that this stops. Pray for the nausea to go away. Pray that she gets the rest that she so desperately needs. And pray for us...because I don't know how much longer we can handle this!

Wednesday, November 30, 2011

Beyond nauseous

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

Tuesday, November 29, 2011


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

Monday, November 28, 2011

A bit off

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

Sunday, November 27, 2011

Talking the night away

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

Saturday, November 26, 2011

Another good one

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

Friday, November 25, 2011

Wonderful day

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

Thursday, November 24, 2011

A good, slightly sleepy Thanksgiving

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

Wednesday, November 23, 2011

Finally sleep

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

Tuesday, November 22, 2011

Another bad one

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

Monday, November 21, 2011

Really bad day

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

Sunday, November 20, 2011

Headed in the wrong direction

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

Saturday, November 19, 2011

Hanging in there

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

Friday, November 18, 2011

Still good but a little off

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

Thursday, November 17, 2011

So happy

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

Wednesday, November 16, 2011


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

Tuesday, November 15, 2011

Happy girl

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

Monday, November 14, 2011

Good day

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

Sunday, November 13, 2011

Our girl is back!

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

Saturday, November 12, 2011

Dysautonomia is a mess

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

Friday, November 11, 2011

Bad days are back...

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

Thursday, November 10, 2011

Long night, long day

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

Wednesday, November 9, 2011

Off again

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

Tuesday, November 8, 2011

Precious girl and walkathon info

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

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

Monday, November 7, 2011


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

Sunday, November 6, 2011

Spunky girl

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

Saturday, November 5, 2011

Some smiles

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

Friday, November 4, 2011

Ear infection = miserable girl

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

Thursday, November 3, 2011

Pretty miserable

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

Wednesday, November 2, 2011

Not a happy camper

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

Tuesday, November 1, 2011

Still a little off

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

Monday, October 31, 2011

Sleep Deprived Halloween

Reagan was up A LOT last night. She didn't go to sleep til close to midnight and then she was back up by 12:30pm fussing. I stayed up with her from 12:30-4:40am! She wasn't happy either. She was either fussing, full out crying, or just being an all around pain the entire time! She woke back up at 5am and Mike laid down with her til she fell back to sleep. It was a looooong night. To top it all off, our nurse sends me a text just before 7am telling me that she's sick and not coming in today! Talk about perfect timing!! Reagan slept in (of course she did), but I had to get up and give her all of her medicines. Thankfully my mom was here so she was able to help me out a little. I decided to go ahead and take her in to the pediatrician's office...just in case. We woke her at 11 to take her in and she woke surprisingly happy. Her pediatrician said she has a little fluid in her ear but nothing horrible. She is congested though and gave us some nasal spray to calm down the inflammation in her nose. She's been pretty good most of the day, although at times she can be very high maintenance and fussy. We were able to take her trick or treating down our street tonight though. She seemed to enjoy it and she was probably the cutest Dorothy ever!!! Here are a few pics...