Wednesday, February 29, 2012

Sweet but sensitive

It's been a bit of a weird day for Miss Reagan. She slept last night but was a little restless. She woke up this morning around 6am and laid in her bed til Daddy picked her up at 7am. She been good today (happy to just roll around on the floor and chew on her fingers) but sensitive. There were multiple instances when she got red/teary eyes when someone was talking in front of her (like me and the nurse). The thing is, she doesn't mind talking as long as you're talking directly to her, but the second anyone tries to have a conversation around her, that's it! She took a little nap this morning and was making a funny sound while sleeping. I moved her from her side onto her back and then she started crying in her sleep! I don't know if maybe she's having tummy pains or what...it has been a while since her last dirty diaper. This afternoon we took her into the pediatrician's office just to get her checked out and everything looks fine. Ears look good, throat looks good...her doctor thinks she's just picking up on the fact that something big is about to happen. I'm skeptical about that...I think it's more like we're in for another really short good cycle. But I don't know why. What is going on that is causing this shift?? And how long can her little body take this much back to back to back assault from these bad days?? I don't like it. I don't like it at all. And talk about bad timing...right as we're about to bring another baby into the house!?!? Ugh. I'm a little stressed to say the least. Hopefully she holds on and has at least a few more good days for her nurse and grandma's sake!!! Please keep all of this in your prayers...we really need more good days for our sweet girl!

Tuesday, February 28, 2012

Sweet girl and baby update

Reagan slept the whole night through last night and then woke this morning a little after 7am. I think her night nurse was glad to get to see her awake (and happy) before she left. She's been a sweet girl again today. She's been talkative and smiley...but she has had a few instances where she seemed to be getting a little over stimulated and even gave the fat lip. She also seemed a little cranky toward the end of her "school" session but then she fell asleep and crashed for 3hrs...so maybe she was just tired. I sure don't like it that we're seeing even a little agitation on these days...everything should be ALL good right now at the beginning of a good streak. Please keep it in your prayers that she gets some sleep tonight and wakes up having a super good day tomorrow (especially since we have a temp nurse coming) and many more good days ahead.

In baby news...today I had an appt with my doctor's nurse practitioner (my doctor is still out of the country until Wed...her first day back is Thurs). The final report from the ultrasound I had last Friday said that Ryan was approx 8lbs 4oz. Based on that, he would still be under 9lbs this Friday...so instead of doing a c-section, they are going to induce on Friday. The plan is they will admit me Thursday night and administer Cervidil to ripen the cervix. Then Friday morning they will start Pitocin and hopefully everything will go quickly and smoothly and I'll have a baby by afternoon. What's funny is that even though he's slightly smaller than what they originally thought...I was measuring 41 weeks last week (at 37.5wks) and this week I'm measuring 44.5wks (at 38.5wks) and I didn't gain a pound!!! I literally can't go anywhere without causing a scene. Everyone has to stop me and ask me when I'm due, is it a boy, am I having twins (or triplets), etc... It's crazy!!! Granted, my belly is much larger than with Reagan (which I guess can be attributed to the fact that not only is it a boy, but a big boy) but I certainly wouldn't think it's something to get this much attention! I'm also having a horrible time sleeping. I can't get comfortable in any position (my hips are so achy...it's painful just to move). I'm pretty desperate so I think I might try to sleep in the recliner tonight. And my feet, they are beyond swollen! So I guess it's a good thing we're getting this show on the road a week early. I don't think I'd survive another week of this!!! Please keep us all in your prayers!!

Monday, February 27, 2012

All good

Reagan slept the whole night through last night and then woke all smiles this morning. She did doze back off around 10:30am but then woke up around 12:30 and was just as sweet as can be. She's been a darling all day. Very smiley and very vocal. Talking in that sweet little voice...I can't tell you how nice it is to see her finally feeling better!!! Tonight she dozed off at 9:30pm and has been OUT ever since. I'm pretty sure she's going to sleep like a log and her night nurse will have nothing to do, but that's OK. This princess needs her sleep. Please keep it in your prayers that she has many, many more good days!!


Smiling in her sleep during her nap!

Sunday, February 26, 2012

Sleeping cutie

Reagan slept last night!!! And she slept all day. Poor girl. She really needed that sleep. She woke up once around 6pm but she wasn't awake long. I picked her up and brought her into the living room. She was still very groggy but she was smiling. About 30min later, she dozed back off in my arms. Such a cutie. Of course, now it's 11:15pm and she's back awake. Hopefully clonidine will help her get back to sleep soon. I'm so glad that not only did she finally catch up on sleep, but her nausea is gone. I'm hoping she'll have an extra long good streak this time around. We really could use more than a week of good days...especially considering she should be getting a brother this week!

Saturday, February 25, 2012

Super nauseous but smiles

Reagan was up nearly the entire night again last night. She dozed off a little here and there, but mostly it was Mike and I dozing off. I stayed up with her til 2am and then Mike got up with her so I could sleep from 2-8 (and then he slept 8-12). She was very nauseous, having tons of chorea, and having bouts of crying/yelling that could wake the neighbors. But ever since I got up with her at 8am, she's been a lot more calm. Still super nauseous, making gagging faces nonstop and retching constantly, which is beyond painful to watch. Spit pools up in her mouth and she just can't control it. It's too much for her to swallow and she fights to keep it in her mouth, making it even worse! Poor girl. This continued all day long. It was hard to hold her because all she would do is arch backwards nonstop choking on her spit, so again she spent a lot of time in her chair today. This afternoon she did start giving us smiles (despite the nausea), which gave us a little hope that she might be trying to pull out of this. She never took a single nap, but finally around 11pm she began to doze off. Mike just laid her in bed at 11:50pm (for the first time in days) and she seems to be OUT (which is good because she was still extremely nauseous until the second she fell asleep). Thank you for your continued prayers for our girl. She really has been through a lot lately and I just pray that we're in for an extra long good streak this time around!

Friday, February 24, 2012

Up all night

No, I'm not talking about the new Christina Applegate show (although it is pretty funny)...I'm talking about our night last night. Reagan was not falling asleep last night so I sat up with her. Of course, I was thinking she'd eventually doze off, but she never did. She was also very fussy. Lots of whining/yelling, crazy amounts of chorea (arms flailing, legs kicking), and of course the biting. Ugh. Not a fun night. I never made it to bed and I really only dozed off for a few minutes here and there (the same amount of sleep Reagan got). Of course, sitting up all night was not good at all for my pregnant body and I started the day with super swollen elephant feet! I wasn't able to go to sleep because I had my ultrasound this morning. It was at the hospital and they really didn't give me much information except that they were sending the report to my doctor (who is out of the country right now). So I probably won't know much until my next appt which is scheduled for next Tues with the nurse practitioner (only a few days before the date that's already been set for my induction/c-section). Reagan seemed to have a little less chorea this morning, although it picked back up this afternoon and is still going strong right now (midnight). She's had a couple of crying outbursts today and her nausea has increased exponentially. She had two big throw ups this morning and then has been coughing and retching all night tonight. I decided to go ahead and switch her over to pedialyte for tonight to see if maybe that helps a little. Ugh. I am just so sick of these bad days. We really need to catch a break. Reagan (and her mommy and daddy) really need some rest! The exhaustion is really starting to set in! Please keep us in your prayers!

Thursday, February 23, 2012

Agitated and biting

All I can say is thank goodness we had a night nurse last night! Reagan never made it to her bed. We tried, but the second we picked her up, she'd wake up. The nurse ended up just holding her as she went in and out of sleep, off and on, off and on (all the while being very feisty and even trying to bite the nurse). Finally around 4am she was really out-out, so she was able to lay her in her chair where she slept til 7am. At least she got a couple hours consecutive sleep. Her mood today has been a bit of a step in the wrong direction. She's been agitated and fussy most of the day (although no real crying except for when she bit herself). That's right, she bit her right hand (the tip of the pointer finger near the nail bed). So now she's in two arm restraints! Ugh. And to top it all off...she's been nauseous today. Not a lot of gaggy faces, just a lot of tongue protrusion and two really big throw ups. She's also had two dirty diapers again today...something is still not quite right with her tummy. It's funny, because in the past her bad days never really seemed to sync up with her tummy issues, but lately they are happening simultaneously. It makes sense, but I'm not sure why it's just now happening that way. This girl is a mystery, that's for sure. We SO could use some good days. No, really. She could use some good days. This poor girl needs a break for goodness sake!!! Please continue to keep her in your prayers!

Wednesday, February 22, 2012

Less fussy, still tense

Reagan slept last night in two stretches...from about 10:30pm-2:30am and then again from about 4am-8am. She was fussy in between but at least she did finally go back to sleep. And she did manage to end up with about 8hrs total, which would be awesome in my book! Mike and I aren't that fortunate. Between his inability to fall asleep and my inability to stay asleep (and then Reagan keeping us up in between)...we're a mess in the sleep department! Reagan's demeanor was a little better today. She was less fussy than yesterday and the day before...but she's still extremely tense. She's still having tons of chorea and trying to bite herself, but it's a little easier to handle without the constant moaning. She had two big dirty diapers this morning, so I'm sure that helped her feel a little better. Of course she also had a big throw up this morning, but it was an isolated occurrence and she didn't really seem to be too nauseous the rest of the day. I'm just hoping we're nearing the end of this bad streak. It's been way too many bad days lately...please continue to keep her in your prayers. And if you could, say an extra prayer for Hudson and Abigail, they've both been going through tough times lately as well!

Tuesday, February 21, 2012

Very fussy

Reagan slept from 10pm-4am last night. The nurse picked her up and changed her diaper and then she fell back to sleep in her arms where she slept til 8am. I'm glad she got some decent sleep. It didn't help her mood though...she woke up this morning very fussy. She's been in quite the mood all day today. Not a lot of crying (although laying her down to change her diaper really gets her riled up), mainly just fussing and moaning (sounding something like an angry baby tiger). She's been pretty miserable all day. Lots of chorea, gnashing her teeth (constantly trying to bite her hand...even with the restraint on), she's tired but so restless it's hard for her to fall and stay asleep. Hopefully she'll get some rest tonight...she did seem exhausted when we put her to bed. Please keep it in your prayers that she starts feeling better soon. This last good streak was only really 2 days long...we could SO use some good days!!!

Monday, February 20, 2012

Definite bad day

Reagan slept last night but then woke up this morning quite fussy. She was very tense, definitely trying to bite, and just all around not a happy girl (probably not the best day to not have a nurse). She did surprisingly well for OT but when we tried to change a dirty diaper at the end of the session...she totally freaked out! She went from fussy to hysterical and she screamed/cried nonstop for 3hrs. After that, she was still fussy but it was more of a fuss/yell than a cry. She had tons of chorea today. Those legs were going nonstop and she kept kicking her mommy. Her hands and feet have been going from normal temps, to warm and sweaty, to ice cold and sweaty. She's also got that distinct bad day smell. She's been bitey all day (and did get Daddy once on the shoulder), so we've had her arm restraint on her nonstop. I noticed tonight however that she bit her right pointer finger right around the knuckle leaving a nice red mark (usually she'll only go for the left hand). What are we going to do with this girl?!?! On a good note...she fell asleep around 10pm and even made the transition from her chair to her bed still asleep. Hopefully she'll get some sleep tonight and wake in a slightly better mood tomorrow. We do have our night nurse tonight (who I love)...so I know at least we'll be getting some interrupted sleep!

Sunday, February 19, 2012

Surprisingly good

Reagan was a little restless and reluctant to fall asleep last night. Mike laid down in bed with her but he fell asleep much sooner than she did! He did finally come to bed and when I woke at 4am I checked the monitor and Reagan was fast asleep. Of course, when I woke at 7am she was moving around and wide awake! Even though she was quiet and seemed OK, I decided to just get up with her. She was a smiley girl and for that I was very happy! She's actually been a sweet girl all day today...what a nice surprise. She's still being very sensitive...loud noises startle her and us talking or even the tv being too loud will cause her to break out into tears. Her hands and feet (and nose) are still cold and clammy. But overall her mood today was good. She was happy to snuggle, squirm around on the floor, and chew on her fingers (her thumb and pointer on her left hand are all red from the chewing). She did start getting a little fussy tonight right before Mike laid her down. I'm not sure what tonight or tomorrow holds, but I'm certainly thankful for the unexpected good day we had today. Tonight we watched Extraordinary Measures, a movie I had wanted to see for a while now, and Mike had DVRed it. I cried several times throughout the movie, because we know what these people were going through all too well. If only a cure for mitochondrial disease was that simple. The problem is that it's not just one enzyme or one gene...it's different for every kiddo and it's quite complex. Don't get me wrong, I'm thankful that Reagan is in the only clinical study available for mito at this time, but it's not the same as a cure. Oh to have a cure...

Saturday, February 18, 2012

Too soon for bad days...

It's been a weird day all around. Last night Reagan slept OK but she was awake by 5am and never went back to sleep. Mike put her in bed with us but that didn't help either. Around 8am I got up with her and put her in her chair so I could go grab her medicine. I wasn't out of the room for 5 seconds when I heard a clunk...it was her falling out of her chair! Granted, she doesn't just fall out of it, she leans all the way over til her body is almost touching the floor...so I know she didn't fall far...but that didn't matter! I was hysterical. I screamed for Mike and he ran in and I was in tears. Reagan was fine when I first picked her up (she didn't even have a mark on her) but once I broke into tears, so did she! Ugh. Not a good way to start the day...and it about sums up the rest of our day as well. Reagan was OK but any time Mike and I would start talking, she'd tear up and get all hysterical again. Even the tv would upset her, if it was too loud. We also noticed that her hands and feet were super cold and clammy. Several times when we put her in her chair today (with harness on), her torso would get so hot, one time she sweat all the way through her shirt!!! So temperature regulation is definitely off. Not a good sign. I can't believe we're already heading toward bad days again...she's really only had two good days this go round!!! Ugh. Stupid dysautonomia. Then this afternoon/tonight she has preferred to be held. Specifically, snuggled up, facing me with her head on my chest. When she's held like that, she seems perfectly content...even smiley. As of now, she's still awake, staring at Mike who's laying down with her and snoring! I sure hope she sleeps tonight. We all need some rest after this day!!


Friday, February 17, 2012

Haircut and pregnancy update

Reagan slept last night...I'm just not sure how much. I heard her talking in her bed sometime around 1am. After that I kept waking up looking at the monitor and seeing her move an arm or a leg but she was quiet. She woke me again at 6am with a noise, so I decided to just get up with her. But when I went in her room, I found her completely still and apparently asleep. So I really have no clue how much she slept last night. Maybe she slept but was just restless. I do know that this morning she had very sleepy eyes and kept looking like she was going to doze off. She has been a happy girl today...smiling and chewing on her thumb nonstop. We took her this afternoon for a haircut. I'm trying to get everything squared away before the baby comes, so I've ordered her birthday outfit, her birthday cake, and we got her hair cut today since it's been a little unruly (her birthday isn't until March 21st and we're planning a party for the 25th, but I figured I'd get a head start on things). She was great for the hair cut and I think it looks pretty cute. We tried to keep most of the length in the front (so we can easily pull it back) but got a little more off the back so it will curl under. She did start fussing (or grunting) a little on our ride home. We checked her diaper but there was nothing there...poor thing was struggling but nothing was happening. With a little help, she took care of business and felt much better afterward. She's been super sweet all night...I just hope she's able to get some sleep tonight! In other news, I'm 37 weeks pregnant today. I went to the doctor on Tuesday and she's estimating the baby is already over 8.5lbs! So she scheduled a c-section for March 2nd (a week before my due date) and if he comes any time before then, great. I have an ultrasound scheduled for next Friday (assuming I make it that long), so that will probably give them a more accurate idea of his size (but it seems he's going to be a HUGE one). I'm feeling fine, although my feet are killing me and really beginning to swell. Everywhere I go people have to comment and either ask me when I'm due (they think any minute) or they seem surprised that I'm not having twins!!! Yes, I know I have a huge belly (more like a beach ball instead of a basketball). It was not at all this way with Reagan...but this is a boy and a very large one at that! So prayers are definitely appreciated in this area. I know a c-section would not be as easy to recover from, but I'm just going to trust in God that whatever happens will be what is best for me and the baby.


Thursday, February 16, 2012

New wheelchair and smiles

Reagan slept until 5am this morning when she woke up and began talking! The night nurse picked her up and took her into her therapy room where she stayed awake until 7am. She slept another hour or so and then woke just after 8am smiling. She's been a happy, smiley girl today. Still a little too easily over stimulated, but good. She had vision/OT this morning, school at noon, and then PT at 2pm and she was great for them all. She was very vocal again today, which was entertaining for all of her therapists. We also used her wheelchair for the first time during therapy today and it was great. It's so nice to have something that not only fits her correctly but is so much more comfortable for her to be in!


I have no idea why these pictures became blurry once I uploaded them to blogger...they are fine on my computer!




Wednesday, February 15, 2012

Sleep and a little crazy

Reagan did sleep last night (thank you Lord) but she woke up this morning still a little on edge. I'm not sure what's going on with her. Normally she'd wake up from an entire day of sleeping and she would be all smiles and perfect. Today she's a little whiny and high maintenance. Of course we had another fill in nurse who showed up more than an hour late (she got here just in time to miss out on the major pee/poop explosion Reagan had all over me). It was a little more liquidy of a poop than usual, so I wonder if maybe she's fighting some little stomach virus or something (she had a similar diaper on Saturday). I don't know. We never really know with her. It just always puzzles us when she doesn't follow her normal schedule and this should clearly be a good day...and she's more or less happy but something is not quite right. I had made an appt to take her in to the pediatrician yesterday morning but since she slept all day, I decided to just cancel it. We'll play it by ear and see how she is tomorrow...she may just earn herself a trip to the doctor's office. This afternoon she's been a little better. Still on the verge of crazy at times but she's managed to not go over the edge. She's been very high energy and only dozed off for a few minutes this morning. She had two therapies today (both speech) and she actually did great for both! Then tonight our friend from Bible study came over and watched Reagan so Mike and I could go out for a post-valentine's day dinner. So sweet of her. We figured it's probably the last time the two of us will get out for a very, very long time! We had a nice dinner and Reagan was happy and well behaved the whole time we were gone. Then tonight she fell asleep snuggled up on her daddy...such a cutie pie. Hopefully she gets some more good sleep tonight. If not, we do have our night nurse working an extra night tonight (we're trying to get at least two nights a week covered for when the baby is born).

Tuesday, February 14, 2012

Sleep and some serious tears

Reagan finally slept!!! Granted, it was in the arms of the night nurse, but at least she slept! (she tried to lay her down once and she woke up, so she just held her the rest of the night) This also means that Mike and I finally got a good night's sleep! Oh sweet sleep. Reagan continued to sleep all day long. We kept checking on her all day, but she never budged (she also didn't have a single wet diaper). Then tonight I was in her room giving her some medicine and she was moving around, so I started talking to her and she was smiling and stretching and then she opened her eyes. She seemed happy enough so I picked her up and brought her into the living room, where she proceeded to freak out! She had been so sweet in her room and then she started screaming bloody murder! This went on for quite a while. It was a cry like something was really hurting her...a terrible cry that I haven't heard in quite sometime. She kept her eyes closed a lot, which makes me think she may have not been ready to wake up in the first place (I probably should have just left her alone). She did finally have a wet diaper and after I changed her I picked her up and the position I had her in (crunched over at the waist), seemed to help and she fell asleep. Of course she woke as soon as we tried to move her. I held her in a similar position and she fell asleep again. We were eventually able to transfer her back to her bed...I just hope she's able to stay asleep and she wakes up happy tomorrow!

Monday, February 13, 2012

Nausea and chorea

Reagan had another awful night last night. She was SO nauseous and only fell asleep once at the beginning of the night and slept for maybe 30min or so. The rest of the night she was in her chair, kicking around nonstop and choking/gagging every 20min or so. I spent my night on the sofa beside her making sure she didn't choke. It was a long night and the day wasn't any better. The nausea continued all day. She's been getting pedialyte for over 24hrs now and she still doesn't seem to be feeling better. She's still got a lot of fluid, foam, & air coming out of her g-tube. I'm hoping we're almost done with this, because watching her retching nonstop really breaks my heart. Her hands and feet are still like icicles and the chorea has been out of control...she kicks and kicks and kicks nonstop all day long. The one positive thing, we did get a few smiles today...the first smiles we've seen since last week!! Hopefully that's a good sign. And hopefully she gets some sleep tonight...she must be completely and totally exhausted at this point. We do have a nurse tonight so I know she'll be in good hands and we'll finally be able to get some rest. Please keep her in your prayers!!!

Sunday, February 12, 2012

Nausea

Last night Reagan was a handful. She was very fussy/moany and it seemed every time we got her to sleep, she would wake up 30min later fussing! She only made it about 30min in her own bed, so most of the night (and day today) was spent in her chair. She was also leaning completely out of her chair, so we had to push her up to the sofa to keep her from falling out, well then she started leaning the other way out of her chair and nearly fell out! Turkey! Needless to say, she didn't get much sleep last night (and neither did we). Today she's been less fussy, but still very much on edge and super nauseous. She had another really big throw up this morning and ever since she's been making nonstop gaggy faces (and sticking her tongue out constantly). I've drained a ton of fluid from her tummy, so this afternoon I decided to switch her from formula to pedialyte (its been a while since I had to do this). Hopefully she gets some relief from the nausea soon. She's very restless too. She's moving her legs nonstop and she just can't seem to get comfortable for any length of time. I'm hoping she'll wind down a little tonight, especially considering she hasn't taken a single nap all day, but who knows. Too bad we don't have a night nurse tonight! Please continue to keep our nauseous girl in your prayers!!

Saturday, February 11, 2012

Unhappy girl

Reagan didn't sleep very well last night. She didn't last long in her bed and then even once I switched her over to her chair, she was very restless. She woke for good at 5am and never went back to sleep. She was also more whiny/fussy, especially last night and this morning. She's still very much on edge, super cold/clammy hands and feet, and just not a happy camper. I noticed she seemed a little nauseous today so I tried several times to drain her tummy. I never really got that much out of it, but then tonight she had a huge throw up. It was really several big throw ups one right after another...a couple of which were projectile. Poor thing. Hopefully that has passed and she'll be able to get some sleep tonight. We all could really use a good night's sleep. I keep finding myself dozing off while sitting up, I'm so tired. Please continue to keep our unhappy girl in your prayers.

Friday, February 10, 2012

About the same

Reagan slept from 8pm-3:45am last night in her own bed!! When she woke up, I thought she might be up for the night since she had already had almost 8hrs of sleep (too bad I can't go to bed that early). I got up with her and she wasn't awake for long before she fell back to sleep in her chair. That didn't last but maybe 30min and then I had to get back up. This time she was NOT happy. Very moany/fussy. She cried and I tried her in multiple positions until I finally got her legs spread and head on my shoulder (also known as the poo poo position), where she finally calmed down and fell asleep. I was afraid to move so I just held her like that for a while. Eventually I was able to transfer her back to her chair and where she still woke up and moved another time or two but stayed calm and fell back to sleep on her own. She woke up for good at exactly 8am as her nurse walked in the door. She's been about the same today as yesterday. A little moany/whiny at times, still a little groggy, but she did have a good OT session this afternoon and even gave us a few laughs, so maybe she's starting to feel slightly better. Today I had to go to an ARD at her school (which she's never attended). Such a waste of time...but at least it's done with. They scheduled it a little early since they figured I'd be busy with a new baby in March. Good news on the insurance front...our insurance did reapprove the wheelchair this morning, so the seating rep came over to our house to get me to sign the papers. Now it's technically ours and not a "loaner" (and now it will finally go toward our deductible). I also mentioned to her that I wasn't happy with how the frame turned out and she said no problem...they'll order it in Cosmic Purple and switch it out! So at least the frame and the sides of the cushion will both be in the purple family (not exact matches, but certainly better than purple and blue)! I know, I need to take a picture of her in it. It's just been hard with her feeling so "off". I'm hoping my girl will start feeling better this weekend!!!

Thursday, February 9, 2012

Sleep and a wheelchair

Reagan did sleep a little better last night. She fell asleep early (for her) and then slept til right around midnight. I was already in bed but she literally woke the second Mike laid down. He was a good husband though and got back up with her so I could get some extra sleep. He brought her into the living room where the two of them fell asleep. He finally came to bed and she slept the rest of the night in her chair. I woke around 6am because I thought I heard her moving over the monitor, but it must have been the dog because she was still out. She woke around 7:15am...still cranky but no crying. She's been that way all day. Very tense, lots of frowns, lots of moaning/fussing, but no real crying (not like yesterday anyway). She's been a little more sleepy today as well. She dozed several times throughout the day, one of which was in her new wheelchair! They FINALLY delivered her wheelchair. Of course there are still some unresolved issues. One has to do with our insurance. We were counting on this chair being processed through our insurance and counting as part of our deductible (before I have the baby). Well, apparently our insurance approval has expired and now they have to get our insurance to reapprove it! They went ahead and left the chair here (as a "loaner"), but that whole insurance issue is still unresolved. Another "problem" I have with the chair is the color. Now I know this seems petty (as Mike has told me many times) but the frame of the wheelchair is BLUE! It was supposed to be this sparkley purple color...granted the name is technically blue stardust...but the swatch totally looks purple and even the rep said it would be purple! I hate that my girl has a blue framed wheelchair that should technically last her 5yrs! Oh and her name that is written on the seat back (that was supposed to be in lavender) is pinkish! Again, I know it's petty, but come on! Other than those issues, we do like the chair for her. It is SO much more cushioned and comfortable than her previous chair (so much so, she fell right to sleep in it)...and better yet, it fits her! She had totally outgrown her other chair (and her stander). She's getting to be a big girl, I guess. I'm hoping she will start feeling better in the next couple days. I hate to see her so miserable...but I am glad that she's at least getting some rest. Tonight she fell asleep at 8pm... we'll just have to see how long that lasts. Hopefully we can all get some sleep tonight! Thank you for keeping her in your prayers!

Wednesday, February 8, 2012

Tummy problems

Well, the tide has definitely turned. Reagan woke up at 5:15am crying! Don't get me wrong...I'm happy she slept that long...but we knew what waking up like this meant. Bad days. We saw signs of it yesterday but we always hope we're wrong. I got up with her at 5 and she was fussy but OK til right before 8, when started crying and had a dirty diaper that was a chore for the poor girl to get out! Afterward, instead of feeling better, she kept crying and didn't stop for over an hour! Poor girl. She's really plagued by tummy problems. Then she was OK, still fussy/whiny, but OK for another hour to hour and a half before she started crying again. Her speech therapist came and spent most of her time just trying to calm Reagan down. She did fall asleep in her lap for maybe 5-10 min but the second she tried to lay her down, that was it, she was up again and crying. She had another dirty diaper this afternoon with less crying, but still painful you could tell. She seems to be doing better in her chair with no one messing with her...although she's still very tense and stressed. She is definitely fussier when you're holding her. I think she's tired, but just can't sleep. And her tummy is obviously bothering her. We did have a stand in nurse today. She at least watched Reagan so I could do a few things around the house. Still no regular Wednesday nurse though. It's so frustrating that they can't staff ONE day! Ugh. Don't get me started. Tonight Reagan was about the same. Still tense and whiny. Around 8:30pm she dozed off in her chair and Mike was able to carry her to her bed. I'm not sure how long that will last, so I should probably try to wrap up her medicines as quickly as possible and get myself to bed as well. Please keep our miserable girl in your prayers...

Tuesday, February 7, 2012

Sweet but not sleeping much

Reagan was a stinker last night in the sleep department...thankfully we had a night nurse. She went to bed around 11pm but then was back awake by 2am. She was kicking and moving all around, so after about 20min of that, the nurse just went and picked her up. She fell back to sleep in her arms and slept til 4am (just in time to say bye to Grandma) and then fell back to sleep and slept til sometime after 5am when she woke for good. She was a smiley happy girl though, so who could be mad at her! She was a good girl all day today. Still very active, lots of kicking and moving those legs around (she's got bruises on both knees from whacking things with her legs)! One thing we have noticed is her temperature regulation is a little off right now. Her hands and feet have been cold and clammy but her back gets all sweaty and overheats very easily. Hopefully she fights those bad days off because we still have some busy days ahead of us this week. I did get another call from the nursing agency today saying our Wed nurse is out for good...she's got a broken leg. I was fed up with the nonstop excuses and had it out a little with them (it's always something). Tonight they called to say they were sending someone new out tomorrow, so we'll see. Today I had my 35.5wk appt. I'm still measuring big, but only 2wks ahead this time. He's completely changed positions and is no longer head down...talk about stinker! Assuming I'm still pregnant at 38wks, she wants me to get another ultrasound to check his size. So no big news just yet. As uncomfortable as I've been, it seems I've still got a way to go. Oh well. No rush. I'm not exactly looking forward to dealing with two kids up in the middle of the night anyway.

Monday, February 6, 2012

Sleep

Reagan slept fairly well last night. She did have one weird thing that happened. Around 1:30am I woke up to her making grunting sounds. She kept doing it over and over so Mike and I got up and took her into the living room. She never really woke up, her eyes were still closed and she continued grunting for maybe another minute or so, and then she completely relaxed and was out cold (so much so, we kept checking her to make sure she was breathing). We put her back in bed and turned up the monitor and she slept through til right around 5:30am. For some reason, her waking time seems to be getting earlier and earlier lately. First it was 6, now 5...I'm not a fan! She woke super sweet and happy though, so we just cuddled up and watched tv together. She's been a really good girl all day today. Very smiley, still squirmy, but less vocal than the last few days. Grandma and I ran around today trying to get some things to finish off Ryan's room. I'm glad we did because I've been having some pains today that make me think I might not be far off from having this baby! I've got an appt tomorrow with my doctor so I'm interested in hearing what she thinks. Not that I'm ready...I'm definitely not ready...but when are you ready? I've certainly reached the point of being uncomfortable doing just about anything. And unfortunately that includes sleeping. I'm exhausted but sleeping is no longer an easy task! Just getting into bed is a chore! OK...enough complaining. Time to try to get some sleep! We have a night nurse tonight so it won't be Reagan's fault if I don't sleep well.

Sunday, February 5, 2012

Still spunky

Reagan slept last night but woke up around 5am jib jabbering nonstop. I couldn't get back to sleep with her going on and on like that, so I just got up with her. We snuggled together in the recliner and both of us dozed off for a little while...but neither of us ever really got any more real sleep. She was precious though and I do love spending that quality time with her. She's been a sweet, smiley girl all day today. Still spunky and vocal but a lot less squealing/screaming than yesterday (see video from yesterday's post). Very active, kicking and squirming, hands in her mouth, hands in her hair. She's a turkey! Hopefully these good days will continue...it seems she's had way too many off/bad days lately. And we all definitely need some time to catch up on sleep!

Saturday, February 4, 2012

Rallying for Reagan

Reagan slept well last night but then woke bright and early this morning at 5:45am. She was not going back to sleep, so I finally got up with her at 6am. She's been a happy girl...but a bit on the crazy side. She's been super vocal all day. Lots of sounds but tons of squeals/screams...all day long. At times it seemed like she might be getting a little fussy, but she always had a smile on her face, so I guess she was happy. This afternoon was the Energy for Life Walkathon. It was super rainy all morning...it was still coming down pretty good when we left for the walkathon...but we were going to go no matter what! It was still raining when we first got there but just in time for the walk, the rain let up and it all worked out for the best. It was a little cool and windy but at least the rain had stopped. Our team had a pretty good showing (especially considering the weather)...approsimately 28 adults and 14 children. We had some that had quite a drive to get here, my dad drove in from Austin, my mom from Dallas, and Mike's parents came in from Louisiana, but everyone that came really did go out of their way to come and show their support because it was certainly far from optimal conditions today. We had a good time though and yes, Reagan's extremely pregnant mommy did make it the entire 5k! I'll probably be paying for it tomorrow! Our team Rallying for Reagan also raised $7663 this year (and we still have some more donations coming in)...so that's a good thing.


Here's a short video to give you an idea of the squealing she's been doing...(make sure to pause the blog music at the bottom of the page)

video




Grandma painted these umbrellas to spell out Reagan (they were just black umbrellas)









Friday, February 3, 2012

Super spunky

Reagan slept the whole night through and then woke up smiling around 7:30am. She's been super smiley and spunky all day today. Still moving a lot. Very vocal. Lots of squeals and other sounds coming from this girl all day. She had three therapies today...vision, speech, & OT...and she did great for all of them. It's so nice to finally see her feeling better. Her hand has been in her mouth a lot...but no biting. Tomorrow is the walkathon. The weather forecast is not good but I'm hoping somehow we'll get a break in the rain long enough to actually walk! Last year it was ice, this year rain! I guess having a walkathon in February has its risks. Reagan finally started winding down and looked like she might go to bed early around 9pm...but she was up and moving around again only 15min or so after laying her down. She fell back asleep again after 10:30pm, I'm hoping this time she's down for the night. We are all still trying to catch up on our sleep.

Thursday, February 2, 2012

Sleep overload

Reagan fell asleep early last night and then slept through til 11pm tonight! That's right, she slept over 24hrs straight and then decided that it was time to wake up just in time for bedtime tonight. In the small amount of time that she's been awake, it's so obvious that she feels much better. She's smiling and vocalizing a lot...she's too cute. Today she was OUT. She even had an appt with the mito doctor today and slept through us changing her clothes, putting her in and taking her out of the car multiple times, checking her vitals (talk about the easiest blood pressure reading ever), a med student and doctor checking her reflexes, a light being shined in her eyes...NOTHING was waking her up! Poor girl. She obviously needed that sleep. Now it's midnight and I gave her clonidine about 15min ago and she's back out. Time for me to fix her formula and get both of us to bed!!!

Wednesday, February 1, 2012

No sleep but feeling a little better

Reagan did not sleep last night...and neither did we. It was a looooong night. Reagan was extremely restless (having tons of chorea) and she would only sleep for short periods when Mike was holding her completely still. She ended up in our bed where she pretty much kept us up all night long. On a good note...she's been smiley today. Not overly happy, but I even got a few laughs out of her, you can certainly tell she's feeling better. She's still moving a lot and her hands/feet are still cold and clammy but I'm hoping she's headed for some good days ahead. We've got the United Mitochondrial Disease Foundation walkathon this weekend, so I sure hope she'll be up for it. My only other concern is the weather. The forecast shows a cold-front moving in the day before and rain continuing into Saturday, the day of the walk. I hope maybe it will taper off and be OK by the afternoon! We've got family and friends coming in for it, so I hopefully it all works out. Reagan was awake all day today, so tonight she started getting sleepy right around 8:30pm. I'm praying for sleep tonight. We all really need it! Thank you for keeping our sweet girl in your prayers!