Saturday, October 31, 2015

Not so happy halloween

Reagan slept in her bed last night but she was restless. I think because of all of the sleep she had gotten yesterday. I got up with her a few times but she was getting increasingly vocal and finally at 4am I just decided to stay up with her! She really just seemed to want my company and I was just thrilled to see her awake and not upset! She didn't have a terrible day today, she was just on edge, and understandably so after the day she had yesterday! She slept a lot today (without medication) but when she was awake, she was vocal and tense. Definitely not happy...but not miserable like yesterday either. Just a bit kooky/stressed. Unfortunately her mood wasn't a great fit for trick or treating (or putting on her costume), so she hung out with Daddy while Ryan and I went trick or treating and Grandma handed out candy to the hundreds of trick or treaters that came! This was Ryan's first trick or treating experience and he was going around saying trick or treat to everyone! It was pretty funny! Our house was on the scary side this year with multiple projectors projecting ghoulish characters in our windows! Everyone loved it! Well, almost everyone. There were some kids too scared to come close enough to the house to even get candy!! We did get some cute pics of scary Grandma holding Reagan! She wasn't scared!



















This scary clown (from American Horror Story) was
sitting in the passenger seat of my mom's car!








Friday, October 30, 2015

Super rough day

Today was a rough day for my girl. She slept some in her chair but would wake back up nauseous and miserable. It was a tough night. Nothing really seemed to be working very well and we were trying everything!! She was just SO nauseous! It's hard to say if it was purely nausea due to her cyclic vomiting or something triggered or made worse by the dental work (her throat did look red). We were even saying how we'd prefer crying over this...watching her gag nonstop was just so brutal to watch! We eventually got our wish. Reagan started crying mid morning and the gagging did in fact stop. Of course, it was a super sad pathetic cry that broke our hearts! She wasn't really responding to any meds over night or early morning, but finally clonidine started working and at least helped her to sleep through some of this misery. My poor girl. I'm glad we took care of her teeth, but it's so hard to see her struggle. Thank you for keeping her in your prayers!

Thursday, October 29, 2015

Dental work

Reagan woke up a little tense and gaggy this morning (with another poo diaper), but calm. I wasn't totally sold on going through with her dental procedure, but since she was so calm we decided to head to the hospital. We got there at our 8:30am arrival time and were quickly taken back. We stopped her pediatlyte feeds when we got there (and she seemed a little less nauseous for a while) but we started them back up around 10am when we found out were getting from 10am to 11:30 procedure start time! The anesthesiologist basically said that since she has a gj-tube (and everything goes through her j tube), she could even continue getting feeds during the procedure (although we opted to just disconnect before they took her back). She had the chief of anesthesiology working with her, so we were pretty confident she was being well taken care of. We did voice our concerns about her sensitivities and the fact that the last time she had dental work, she ended up with a nasty sore at the back of her throat from the intubation tube. I'm confident everyone was super careful, but with her super sensitive skin, anything is possible. It took a little longer than we expected (about 1.5hrs) but they everything went smoothly. No cavities...they did x-rays, a deep cleaning, and sealants. When we got back to recovery to see her, she was already awake and feisty. Definitely still very gaggy. We got out of there fairly quickly and were home by 2:30. Glad to be home but my girl is still nauseous. I'm praying clonidine will help her to doze off and sleep it off! Looks like it will be another night of pedialyte tonight and confined to her chair (it's just not safe to lay her down while this nauseous). Please keep her in your prayers!!










Wednesday, October 28, 2015

Somber but sweet

Reagan slept well (I think) last night. When I got up at 5:15am to run, I realized her monitor had been off all night! I went in to check on her and she had wiggled her way to the bottom of her bed, was laying on her tummy (so she was probably stuck and unable to get back onto her back), and she had her tube in her hand. Butttttt...she was still asleep...so I left her as is. By the time I got back and then got out of the shower, Daddy was moving her into her therapy room with a wet diaper. Well, not only was it wet, but it was a poopy diaper!! Yes, another one on her own! I'll take it! She was sweet and serious. Giving little smiles, but definitely on the somber side. She's been that way all day today. Pretty still, although she does kick off and on (enough to make her sweat), but very disinterested in most things. Her nurse and her teacher tried to get her to use her eye gaze today and she just kept looking down. Not looking down like she was sleepy, but looking down like she was not in the mood to mess with that today! Message received. Her speech and PT both had to cancel today, so not a lot going on. Her body definitely seems more tense today. More overall tone in her legs as well as chorea. We are all set to go in tomorrow morning (Thursday) for her dental cleaning under anesthesia. There is no urgency in doing this, it's just been a long time a coming! It's been over 5yrs since her last cleaning/x-rays/fillings/crowns so she's definitely due. Of course the last time she had this done (diff hospital/dr) she ended up with a nasty sore at the back of her throat from the intubation tube! I'm not sure where she's headed right now (whether she's headed away from or toward bad days) but we're just going to see how she's doing in the morning and decide then. If she wakes up fine, then we'll head over to Dell at 7:15am for an 8:30am arrival time (10am procedure time). If she seems tense or unhappy, then we'll cancel and hopefully reschedule some time later this month. The last thing I want to do is put her through any unnecessary stress (especially when her body is already stressed)! We'll follow her lead. Please keep her in your prayers!!

Tuesday, October 27, 2015

Sweet and calm

Reagan was a little restless last night. She was asleep when Daddy put her in bed, but when I went in to hook her up to her pump, she was back awake, wide eyed and quiet. I gave her some clonidine and I went to sleep. I'm not sure how well she slept, but around 6am she started vocalizing. I changed her and moved her to her chair to watch cartoons. She's been super sweet and calm today. Very still. Slightly more serious, but still giving us smiles. She had another busy day of therapy today. PT this morning, then OT, and then school. We've got to fit in what we can, while she's still feeling well. Her teacher said she was a super star today! Great fine motor skills!! Tonight we brought her downstairs and put her in her tomato chair. She watched me make dinner and by the time we finished eating and I took her out of her chair, she was realllly sweaty! Temperature regulation is definitely off again. I laid her down on a pallet on the floor and changed her pjs. She's had two poos today on her own (I don't even remember the last poo she's had on her own, so that's great) and lots of gas. Her tummy is definitely working in overdrive right now, which may explain why she's been a little more vocal this afternoon. Tonight after brother went to bed, I held her and got in some good snuggles with my girl! I was actually dozing off but she was still wide awake! I had to give her some clonidine and Daddy laid down with her to finally get her to sleep. Sweet dreams, sweet girl.




And here's a video of Ryan singing Happy Birthday to Grandpa (today is his birthday)!! 

Monday, October 26, 2015

Crunchy, smiley, sleepy

Reagan slept well last night and woke up in a good mood this morning. She's been super smiley, but still very crunchy! She had a busy day of therapy. Speech first thing this morning, followed by OT, this afternoon, and then speech/vision therapy! She's been pretty groggy today, taking little cat naps before and between therapies! She seems slightly more tense tonight...she never was able to get too comfortable with me holding her and she's doing lots of teeth grinding (which is driving me crazy)! Hoping she can fall asleep and get some rest tonight! Just found out today that the dental procedure under anesthesia she was supposed to have tomorrow is really scheduled for Thursday! I'm slightly annoyed by this, but we'll try to make it work. Now we just have to see what my girl thinks about that...

Sunday, October 25, 2015

Sleepy Sunday

Reagan had a very sleepy day today. She slept in her bed until around 1:30pm when I discovered she had finally gone pee and leaked in her bed. While changing her, she woke up. She was very smiley and crunchy, but wide eyed and sweet! We brought her downstairs with us and put her in her tomato chair. She was good, just very crunchy. Hands up in her hair nonstop! At one point I found a tiny little strand of hair had wrapped around her finger and was cutting into her! Thank God I saw it, because she wasn't letting us know about it at all! While I ran to get a late lunch, Mike laid Reagan down on her pallet on the floor and she immediately fell asleep! She spent the rest of the day asleep for the most part...she was a little restless, so she'd toss and turn and stretch...but she pretty much stayed asleep. She woke up for another brief stint tonight, so I picked her up and held her, but then she just fell asleep in my arms!! That's OK...I got my snuggling in! Hopefully she sleeps tonight with all of this sleeping today! Thankfully no signs of nausea today and she's now back on full formula! Hoping she can hold it together and have a good week!

Saturday, October 24, 2015

Sweet girl, a little nauseous

Reagan woke up at 5:45am this morning. She obviously didn't care that it was a Saturday or that I had gotten up early with her the night before (or been kept awake most of the night by her brother the night before that)! Thankfully, for me, Mike decided to sit up with her since he was already awake and let me go back to sleep! She was sensitive but calm. I was very relieved to see her waking up OK this morning...I wasn't sure what to expect after multiple episodes of tears yesterday. She was good though and even pretty smiley today. Her temperature regulation is way off...super sweaty back and ice cold/clammy hands and feet. For that reason, we decided to keep her on the floor most of the day. She was happy to just roll/kick around...she's been super crunchy. She's also been holding her pees. I had to help her go around 9:30am (because she hadn't gone all night/morning) and then again around 2:30pm. Tonight she finally went on her own twice...so hopefully no more holding. Tonight she also was sounding congested and the next thing I knew she was gaggy! Ugh. Not a ton, but she was doing it off and on all night. Definitely when she shoved her hands down her throat, but other times as well. But smiling away all the while. Sweet girl. I have no idea where this is headed, but I'm going to go ahead and switch her over to pedialyte tonight and we're trying her out in her bed first. Hopefully she'll be able to sleep! No more nausea, no more nausea, no more nausea! 

Friday, October 23, 2015

Sensitive/off

Reagan slept well last night (I think) but woke up this morning at 6am with a cry! I jumped out of bed and ran to her. I was able to calm her down...I think she must have been laying there awake and just finally got frustrated and had to resort to tears! Unfortunately, those weren't the only tears we've seen today. She's been very sensitive today (music especially and us talking). Needing LOTS of attention. If she didn't think we were giving her enough attention...tears. Poor girl. She's definitely a bit off today. She started the day with warm hands and feet and perfect temp, but by the end of the day she was a little sweaty and her hands/feet were cold and clammy. A little more tense and more movement. Kicking her legs around a lot more, chewing on her hands. Not good. I went ahead started her on pedialyte tonight. I'm REALLY hoping we can somehow cut the bad days off before they start this go round. It's way too soon to go there again. My girl needs a break! Please keep her in your prayers! I'm praying for a relaxing weekend. (By the way, still no word from her neuro on the results of her EEG.)

Thursday, October 22, 2015

Calm, quiet, and sleepy

Reagan slept well last and woke up around 7:30am (Ryan, on the other hand, woke up crying at 1:30am and Mike brought him to our bed! Big mistake! We hardly slept a wink all night!) Reagan had an early make up session of PT and got some stretching in and even some time in her stander. She was tired though and she fell asleep shortly thereafter. And then she slept, and slept, and SLEPT! She slept through diaper changes and everything. She was OUT. She never woke up until right at 6pm. Sometime after her day time nurse left but before her night nurse came. She was calm and quiet. And super snuggly. After the night nurse left (she only works from 6pm-10pm so we can attend Bible study), I sat in a chair holding Reagan and snuggling with my girl. Eventually I started dozing off but my girl was still awake. I moved her to her bed and then Daddy laid down with her. Then she dozed off! Hoping my girl can get some sleep tonight after sleeping most of the day today!!

Wednesday, October 21, 2015

No new AFOs

Reagan slept well again last night and slept in a little this morning waking up just before speech. She was acting a little sleepy during therapy, but as soon as they were done we loaded her up in the car for an appt at the orthotics place. It was a fairly quick appt and the orthotist basically said that he couldn't improve any on her current AFOs, He did add a strap to her inner boot and tightened her braces around her calves (I guess she's thinned out a bit in that area)...so hopefully that helps. He also gave us some good advice on stretching her with her boot on, to keep it in proper alignment and minimize sensitivity issues. She's pretty close to needing a new stander, so that will probably be our next big thing to order. She's been super sweet and precious today. Very still. Good temp. Hoping these good days continue for my girl. God knows she needs them!

Tuesday, October 20, 2015

Relaxed

Reagan slept well last night and even slept in a bit this morning. We thought she might have a sleepy day today, but she did eventually wake up just in time for PT at 11. Her tone is so much better today. She's very relaxed. Her physical therapist was finally able to get in some much needed stretching and even got her up in her stander for a while. Then this afternoon she got in some more stretching with her occupational therapist. And then finished off a very busy day with school/vision therapy! She did amazingly well to have so many therapies in one day...especially considering the weekend from hell she just had! She's had the hiccups several times today...not sure of the significance but just something worth noting. She was vocal at times, but we think her tummy was just bothering her, she has been a bit backed up. We helped her go and hopefully that'll help keep her tummy happy. She sure has been a precious girl today. We definitely need some more days like this.

Monday, October 19, 2015

Better

Reagan slept in her bed til about 1:30am last night, when she woke up and was thrashing about. I moved her to her chair and she seemed to calm down a little and eventually went back to sleep with the help of medication. She slept in her chair until 7am when she woke up. She's been serious but calm today. No more crying, just the occasional vocalization. Definitely better...a little sensitive, but I can finally see the light at the end of the tunnel. She has big, wide eyes today. She's very alert...even if she's not "happy". I'm just glad to see her calm. Wow, what a weekend. It felt like it might never end. So glad it did. Hoping for some good days now for my sweet girl. She SO deserves a break!

Sunday, October 18, 2015

Still miserable but sleeping

Reagan didn't sleep much again last night. Lots of crying. She really didn't want me either. I would try to soothe her and she'd just continue crying...Mike would come in and immediately she'd calm down. Going on no sleep from the night before, it was frustrating and exhausting! She's been doing less crying today and more moaning/whining...but still super miserable. Still super tense (and holding her pees but at least she had one this morning). Thankfully she's been a lot more responsive to meds today and she's been able to sleep a lot more. She's still very zoned out and bitey so we're having to keep her arm restraints on. It's been such a loooooooooong weekend. She's just got so snap out of this soon...right?!?! Praying for sleep tonight and better days for my girl!

Saturday, October 17, 2015

Just an AWFUL day (and night)

Reagan was up most of the night last night and it was an AWFUL one! Seriously, it's been quite the horrendous night and day! She went from super nauseous, to fussy, to screaming crying (and gagging) all night long! Ugh. Awful. We were up most of the night with her. And she wasn't responding to pain meds at all. And that has carried over today. Nothing seems to be helping her (except Lortab and only for short stretches). She's beyond tense/rigid. She's been gnashing her teeth and biting so much that she's bitten the inside of her mouth several times and her breath smells like blood. My poor baby. It's breaking our hearts. She's had to keep her arm restraints on most of the day...the couple times they've been off, she's managed to bite her fingers and scratch her face. It's hard to really explain how bad it is when she's like this. The only thing I can think to compare it to is the point at which someone turns into a zombie...and they have super human strength and move super fast and are biting and thrashing...yeah, that about sums it up. Speaking of zombies, Grandma came to visit today and has been decorating our house for Halloween. This year we're going scary. A little too scary for my taste (I have a hard time even watching scary movies). Grandma is a little obsessed with Halloween. She has been driving around with a skeleton in her passenger seat dressed in clothes and wearing a mask of the clown from American Horror Story. She went to HEB today and came back out to people gathered around her car taking pictures with the clown! We had a nurse working today so we were able to take a few breaks from the crying, but we were all worried about her nonstop. Another issue we've been super concerned about is her holding her pee. She's held it all day long today. Seriously, her last pee was yesterday around 5:30pm. She's just been so unbelievably tense I don't think she's been able to go! Not even for a minute does she relax! Even the few times she's dozed off, she hasn't been able to relax enough to go. It wasn't until tonight around 6:30pm that she finally went! I seriously thought we might be headed to the emergency room. Ugh. One less thing to worry about. Now, if we could just get her to sleep! I'm not sure we can handle another night like last night. I don't know if my girl can handle another night like last night.

Friday, October 16, 2015

EEG, fever, and nausea oh my!

Reagan slept surprisingly well with the electrodes on last night, however, when I looked at the monitor at 6:30am to check on her I noticed her head wrap appeared to be missing. I went to her room and found her completely awake but super still with her head wrap completely off and looped around her arm! We're lucky she didn't choke herself with it! Amazingly, her electrodes were all still secure and in place! Crazy girl! I moved her to her chair. She seemed pretty warm but I just assumed it was because she had been laying on one side most of the night. I used a cute crocheted hat she had gotten during her last hospital stay to cover up her electrodes and keep her from getting her fingers into trouble. I eventually took the hat off because it seemed to be making her head a little sweaty. When her nurse got here she took her vitals and immediately let me know that her temp was elevated above 100. I called the pediatrician's office to see if they could squeeze her in (they could at 11:30) and I called the EEG tech to make sure that we could leave the house with the leads on her head (yes, they keep recording, just without video). So off we went to the pediatrician's office. Reagan was very calm and still so it made it much easier to transport her. You could just tell something was off. She wasn't herself and was getting a little nauseous/gaggy as well. They did both a flu and a strep test on her and both came back negative. Her throat was nice and red though, so the general consensus is that her brother must have given her whatever nasty virus he's been battling for the last couple weeks. I'd like to think that all of this nasty business is just related to her being sick (possibly lowering her seizure threshold)?? Anyway, she was getting increasingly tense as the day went on, so we had to keep her in her arm restraints to prevent her from yanking her electrodes out! She also seemed to be getting a bit more nauseous and spitty and she was cupping it in her mouth until she gagged. She did well with the removal of the electrodes, but was not a fan of me messing with her hair or bathing her afterward! The nausea has just continued to get worse and tonight I find myself praying for sleep and relief for my sweet girl! It's been a tough week! :(

My poor precious girl...she doesn't feel well! :(


Thursday, October 15, 2015

No botox (yet) and impromptu EEG

I'm not sure how well Reagan slept last night. She was very still (but stiff) and laying in bed, opening and closing her eyes off and on. I decided to go ahead and give her clonidine, hoping it would help her sleep soundly. Not sure if it did or not. She was quiet, so it's hard to tell if she was awake all night or if she slept well and woke up just before 8! She was awake at 8 when her nurse got here and she was SOAKED in pee! Poor thing. Laying in one position all night (on her right side), it all just leaked right out! So a complete outfit and bed change were in order. Still very tense in her body this morning with lots of clonus (where her leg will just tremble until you reposition it). Her PT came early because of our afternoon botox appt. During her session, Reagan was sitting on the floor in between her therapist's legs, with her head turned to the right essentially taking a little break (they had been stretching)...when all of a sudden she turned her head fixed to the left, stiffened out and started shaking (eyes fluttering all the while). VERY seizureish. It didn't last long, maybe 10-15seconds and then she snapped back out of it, loosening up and turning her head back to the right. Ugh. I immediately got on the phone with the home EEG company to see how soon we could get them out here. They said they could hook her up this afternoon! Done. Reagan seemed a little more relaxed after getting whatever that was out of her system. OT came shortly thereafter and worked some more with her on stretching. She still had a lot of clonus when OT started but by the time she finished it definitely seemed better. Her OT said she's still got a lot of tone today, but a different sort of tone to the crunchy tone she had last Tues. So after our crazy morning we weren't sure what to do about the botox scheduled for the afternoon. We decided to go ahead and just keep our appt and go in and tell the PM&R doctor about our concerns with her increased tone, she totally agreed that it was worth a shot (and also mentioned that there are now other toxins to try if botox doesn't work). Unfortunately, due to our short notice appointment and insurance being insurance, they only approved a small dose. Way too small for her size and to treat both legs. We decided to just wait until they could get approval for more. So that'll mean rescheduling her already rescheduled AFO appt next week as well. Ugh. So while we were gone we got several calls from the EEG company delaying Reagan's hookup time (the techwas having car problems). So tonight, around 8pm, he finally showed up! We got her all hooked up (she was such a good sport...just wincing here and there from the air compressor). She did have a big (unprovoked) startle just as the tech got her hooked up, so I'm not positive if that was recorded or not! She did it again later when I blowed on her but only once (and I blew on her several times). There were also some suspicious right arm stiffening (and head turning to the right) that she did as she was dozing off. Glad we got some of these things recorded, but I could've done without so many. I hate to see her doing anything seizureish! Hoping she can sleep tonight and not mess with the electrodes on her head. We shall see...
Giving her nurse a big squeeze (totally uncharacteristic of her) after getting her weight at the drs office! Still 52lbs.


Not happy but calm.

Wednesday, October 14, 2015

Super tense and startley

So today has been another super tense day for my girl. Her body is just SO rigid! And she's still serious and so SO sensitive. She's been doing that weird startley thing that resembles way too closely the infantile spasms she used to have. She's doing it in response to air blowing on her, noises, anything really that would startle her is causing a huge exaggerated startle and big gasp. We've had it tested before, when she was in the hospital years ago and doing it so we insisted on an EEG, and then blew on her a bunch of times. It didn't register at all as any type of seizure...just some weird hypersensitive reflex. I'm trying not to worry too much about it but I hate to ever see her doing anything that reminds us of a seizure! She was supposed to have an AFO appt today but with her hypersensitivity, we decided to go ahead and reschedule it to next week. No way she was going to tolerate the casting process (which includes a loud saw they use to cut the cast off), so we canceled last minute. She had speech this morning and did OK with that, but they took it easy and cut it a bit short. Just very serious today. And quiet. And tense. Super cold clammy hands and feet. Something is definitely way off with my girl. Tonight (ironically) I got a call from a home EEG monitoring company. Apparently Reagan's neurologist watched the video I sent him over a month ago and decided she needed to have another EEG. Well I was a bit taken aback by this, since I never even got a call from the nurse telling me about this (and I've NEVER spoken to this neurologist over the phone)...so I told them to call me back. They wanted to hook her up as soon as this weekend!!! Not sure I want to spend my entire weekend with my girl connected to an at home EEG...but at the same time she has been doing some questionable things that we might want to have checked out. But what's the chance she'll still be doing them this weekend...probably none. Ugh. So hard to make these decisions! I guess I'll talk to the nurse tomorrow and try to figure this one out. Taking my girl in for botox tomorrow! We got a call late this afternoon saying her PM&R doctor had a last minute cancellation and they can squeeze her in. She's had botox in the past (5+yrs ago) and we don't really think it worked, but I think anything is worth a shot at this point. She's just been so tense and so tight lately (like lifting a board)...we need something to break that tone!! Please pray that it goes smoothly, as painlessly as possible, no unwanted side effects, and that it actually WORKS this time around!!!

Tuesday, October 13, 2015

Super tense and serious

Reagan slept fairly well last night. I think she was a little restless and tense, which makes for a crunchy sort of sleep! She woke up this morning calm but sensitive and super tense in her body. Seriously, there is some serious tone going on. She's rigid! We've got a morning orthotics appt we have to go to, so I'm really hoping she wakes up in the morning less tense. She had PT and OT today and both worked on trying to get her out of flexion (which didn't happen). She's been pretty much crunched in a ball all day today (her knees up in her face)...except when she fell asleep and slept an hour or so this afternoon, then she was finally relaxed! Really hoping she can sleep tonight. She SO needs that relaxation. Despite being super tense, she did have a good session of school/vision this afternoon. This morning I met with her teachers/school therapists to go over her goals for her upcoming ARD. I'm glad they invited me to this, since they really don't have to. I even heard a neat story from her teacher about how she was taking turns with Reagan the other day squeezing a ball. She did it five times and then gave it to Reagan who then squeezed it five times and then pushed it toward her teacher! She went back and forth 4-5 times doing this!! Pretty amazing. So all in all, it was a pretty busy day. No real smiles, a few hints of a smile. Some mouth movements but she didn't really appear nauseous or anything. And very clammy hands and feet. Hoping my girl can relax and sleep tonight. We all need some sleep. 

Monday, October 12, 2015

Sleepy girl

Reagan slept last night until about 5am or so this morning. Mike went in with her and tried to get her back to sleep. She was still a little nauseous, making a lot of mouth movements, but not as gaggy. I gave her another dose of clonidine and it helped her to doze back off for a couple more hours. She was awake when her nurse got here this morning, but groggy. Her speech therapist came and attempted to work with her, but she was just too sleepy and still making a lot of mouth movements. She perked back up for a bit as soon as her therapist left...silly girl. We decided to go ahead and give her a quick bath and then she fell asleep in the tub! That's a first! Glad we squeezed that in when we did because she fell back to sleep and then slept for most of the afternoon. She woke up again right as the nurse was leaving but then promptly fell back to sleep when Daddy brought her downstairs. She did eventually wake up with all of Daddy's screaming at the television watching the dvr'd Astro's game! She was sweet and smiley but tense (lots of teeth grinding today)! Full of gas and had several pees (gotta catch up for all the holding she did yesterday)! She dozed back off while I was snuggling with her and Daddy moved her to her bed. Hoping she has a more normal awake day tomorrow. 

Sunday, October 11, 2015

The nausea returns

Reagan didn't sleep much again last night. She woke up pretty tense again and was on edge. Even Daddy giving her a kiss moved her to tears! She recovered quickly though and was even giving us some smiles! Her temp regulation was still way off today, so she spent a lot of time on the floor again. I moved her tv to the floor so she could see it better and it stopped working! Ugh. It's been on the fritz for a while now, so I guess it's finally gone kaput! For now we're making due with the spare bedroom tv, but I guess I'll be tv shopping in the near future. So for most of the day Reagan was pretty good, tense, but good (and holding her pees again). Then tonight the nausea hit! I don't know if it had anything to do with her laying down all day or maybe it was triggered by a sore throat (like her brother and I both have) or maybe it's just her CVS back again. She has had several bouts of nausea in the last month or so...the first two were 10 days apart, then the next two were 12 days apart, and this one is 20 days since the last one. Ugh. Go away nausea. I don't like it...not one bit! My poor girl was gagging and retching all night long! We tried promethazine (since Zofran never seems to work)...nothing. Eventually we just got her set up in her tomato chair and gave her an early dose of clonidine. Thankfully she dozed off. Praying she stays asleep and wakes up feeling better!

Saturday, October 10, 2015

Tense and on edge (and Maui family photos)

So we don't think Reagan slept very well last night. Literally the second I laid down (at 12:30am) she started fussing. She had already been given clonidine (which along with Daddy helped her to fall asleep in the first place), so I gave her a dose of oxycodone. I think she fell asleep...because I fell asleep! Mike said he went in there around 4am and she was kicking around. He tried to get her back to sleep, but she wasn't going for it. Thankfully she laid in bed quietly so that I could sleep in til around 7am. I got up with her and Ryan just as Mike was laying back down. She woke up very hot, so I checked and she's still running a low grade temp. She's also back to having a sweaty back and cold hands/feet. She's very tense today. And on edge. We've been watching a lot of football (Sic Em Bears) and just the slightest bit of music (fight song or on a commercial) would send her straight to tears! Luckily, she has recovered fairly quickly. She also wasn't a fan of us talking...about anything! Other than that, she's been pretty precious. Happy to just lay on the pallet on the floor we made for her and watch football. I went ahead and started adding pedialyte today. I'm not sure where she's headed, but I'd sure like to avoid a real bad day. We got our pics back from Hawaii! I'm SO happy with them and can't thank the photographer BellaEva Photography enough. If you ever find yourself in Maui, definitely look them up! Beautiful work!