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!