Today was a sleepy day for my girl! She slept and slept and slept! She woke up at one point this afternoon and fell back asleep immediately. Then she woke up again just in time for school. It was a strange awake though. She was VERY crunchy and constantly up in her hair and half the time she'd have her eyes closed and the other half they'd be wide open! It was hard to tell what she was up to! The teacher and the speech therapist from school did their best, but it wasn't the most productive day for learning! She was awake the rest of the night (but still very crunchy) until she dozed off in my arms around 10pm. So sweet! Love this girl! And by the way, thank you for your prayers! Ryan had a great first day at school. He only got upset and started crying once, but that was when another kid (who had a late drop off) started crying! But he calmed down quickly and seemed to have a great day! Hopefully Wednesday goes as well, now that he realizes I'm actually leaving him at this place! Keep those prayers coming! We're hoping he thrives in this environment!
Monday, March 31, 2014
Sunday, March 30, 2014
Reagan had a nice relaxing day today. She slept well last night and woke up sweet and smiley and super relaxed. Definitely very still and laid back today. We watched Frozen (one of her birthday presents) twice today! Such a cute movie. This afternoon we hung out for a bit in our neighbor's back yard...they've got two little boys and nephews (one of which is Ryan's age)! Reagan was totally relaxed even with all of the commotion 6 boys make! Tonight she drifted off to sleep in my arms without any sleep medication and was OUT! I know we're in store for a sleepy day soon, and it's looking like it might be tomorrow! (Speaking of tomorrow...it's Ryan's first day of "school" and I'm a nervous wreck! Please keep it in your prayers that he does well with this transition! It's only two half days a week, but it's a totally new experience for him!)
Saturday, March 29, 2014
Reagan was a little restless last night. She's in that laughy, excitable part of her streak right now...and while it's good because she seems to be "happy", she typically doesn't sleep as well during these times. We had a nice family day today. No nurse, just us, so we took a drive out to Marble Falls. Beautiful hill country views (only minutes from our house) and it was a beautiful drive the entire way! We went out to lunch, went to a park (on the water with ducks), and did a lot of driving! Both kids were great (Reagan was especially good) and we had a wonderful time! Definitely want to try to get out more together as a family!
Friday, March 28, 2014
Reagan had a pretty good day today. No more nausea, just the occasional tongue protrusion or cough, but just to be on the safe side we did continue the Zofran. She had three back to back to back therapies this morning and tolerated them all very well. She's had some crazy laughs today off and on, but other than that, not a lot to report. Still has a case of the poops, but she was overdue for one, so it's good she's getting that out of her system! Hoping for a nice relaxing weekend for my girl!! Brother starts "school" next week...lots of prayers needed for that!
Climbing on sister's wheelchair...trouble!
Thursday, March 27, 2014
Reagan slept in her bed last night! She was still asleep when I went in at 3am to give her her Zofran, but when I woke at 4am, she was wide awake and moving around. I moved her to her chair because she seemed nauseous and gave her a dose of clonidine. Thankfully that helped her to doze back off and we all slept in til 7:30am. She woke back up still very nauseous and stayed that way most of the day. Lots of gaggy faces and retching, but thankfully no real throw ups! She'd have periods with tons of chorea and then periods where she seemed very relaxed and calm. Multiple dirty diapers today so maybe that's partially responsible for the nausea! Tonight she dozed off on her own, so I'm really hooping she'll stay asleep and get some quality sleep in her own bed! Please keep it in your prayers that she gets over this quickly. Such a sweet girl!
Wednesday, March 26, 2014
Well today was definitely worse than yesterday! As much as we hate to do it, we let Reagan sleep in her chair last night. I think she slept well until right around 4am, I saw her awake and kicking around. I'm not sure if she ever went back to sleep, but she did doze off and on today so maybe that's why. She's had a bit of a rough one today. Periods where she seemed pretty stable and would even give a little laugh or two, but then periods of extreme discomfort where she'd cry and cry like she was in pain! Poor thing! We hate to see her so miserable! She really only had pain/sleep meds this morning and this afternoon she was pretty stable without them. Tonight she even dozed off without any meds, so I'm hoping she'll get some good sleep tonight. We were even able to move her to her bed and change her diaper without her waking up! Sleep well my sweet girl!
Tuesday, March 25, 2014
Today has not been a good one! Reagan slept well as far as I could tell, but she wasn't moving so it's hard to tell how long she had been awake. She woke up OK, definitely tense but OK. It wasn't until her first (and second) therapy that she freaked out! Way too easily stimulated, she was just NOT having therapies today! There were a few meltdowns, but no real crying, that is not until tonight! She had a major freak out for Daddy and then another for me during a diaper change, but overall she's just been super tense (hands in the mouth a lot, crazy laughs, sticking her tongue out). We started the Oxycidone/Zofran today, so hopefully we'll stop it from escalating. Please say some extra prayers for my girl!
Monday, March 24, 2014
It's been a bit of a weird day for my girl. She slept OK, but didn't wake up super smiley. She's had some smiles today, but not nearly as smiley as previous days. Her body was very tense this morning, so much she was jittery with tension! This afternoon she was almost completely opposite! Very still, no chorea or movement whatsoever, and floppy! She and Ryan had their yearly check ups at the pediatrician's office and she was very loosey goosey! She's fallen a bit on the growth curve, she's right around 25 percentile for height and weight, while her brother is still holding strong at 99 percentile for height and weight! Nothing else to report from the visit. We still have some concerns about Ryan's speech delay, but we think it will resolve once he starts "school" (half days twice a week) next week! Reagan continued to be very still but tense tonight and she's still having temperature regulation issues...she's definitely "off". Hoping she'll have a quick and mild streak this go round!
Sunday, March 23, 2014
Reagan slept well last night and woke up smiley again. She was probably even more crunchy today (constantly crunched up in a ball with her hands knotted up in her hair)! Definitely more tense than previous days. Her temperature regulation was also a bit off, she had clammy hands and feet and a sweaty back! But she was still a sweet smiley girl, so for that we were thankful. And when we would hold her she'd actually relax a bit, so we all got some snuggle time in today! Hoping for some relaxed happy days for my darling girl! Still cleaning up the party aftermath! I've been surviving on a diet consisting primarily of cupcakes for the past two days, so at least I have some energy! These parties are a lot of work, but worth it!
Saturday, March 22, 2014
So my mom and I were up nearly all night decorating and getting ready for the party! Our house was full of everything Cat in the Hat...even a forest of Truffela trees (all handmade by grandma)! Reagan was awake and smiling today and thankfully all of the commotion and noise of the party didn't seem to bother her (but she was still VERY crunchy)!! We had LOTS of friends and family...just under 50 people total! We had a packed house! We had a birthday bouncy house in our driveway and that kept most of the kids (and some adults) entertained! It was a lot of work but it all came together in the end and I think Reagan and Ryan both had a good time! I'll post some iPhone pics and once our photographer edits his pics (my brother in law), I'll post those as well!
Friday, March 21, 2014
I feel awful about falling so far behind in my posts! I've just been crazy busy the last couple of days!! Friday's post is as follows...
Today is Reagan's birthday! She was still a little sleepy today, but she woke up and had a good joint session with her OT & Speech therapist. Her OT is working with her using a laser pointer on her head to follow what she's looking at or "choosing" (you know, since we're still working on getting her the eye gaze)! She was awake for a bit but then passed out again toward the end of the session! Such a sweet sleepy girl! When she was awake today, she was very smiley but also very crunchy (hands in the hair crunching in a ball nonstop)! But such apeaceful sleeper!! Hoping she is awake and happy for the party tomorrow!!
Thursday, March 20, 2014
Reagan was sleeping soundly last night, or so I thought! I woke up around 7am to find her in bed kicking around and completely soaked! Her extension tube had popped out of her tummy and her pump was just feeding her bed all night long! Poor thing! She was drenched and cold...but still smiling! I changed her and we snuggled with her for a bit and she seemed to settle down and relax a bit. She was a sweetie all morning but stated getting sleepy during OT and by 10:30am, she was OUT! She snoozed the entire day away! I guess two days of nonstop laughing really wore her out! Finally around 8pm she woke up and was a sweet smiley girl, albeit a little crunchy/kicky' she wasn't awake for long though and after a diaper change she was back out again and ready for bed! I knew we were in store for some sleepy days, that's just been herpattern lately! I'm hoping she'll wake up for her birthday tomorrow! (Or at the very least, the party on Saturday!!)
Wednesday, March 19, 2014
Reagan slept part of the night last night...the other part she spent laughing away! She's had a serious case of the crazy laughs all day long! And tons of chorea...making it nearly impossible to hold her! She's been happy though (albeit a crazy happy)! Lots of squeals and screams, but thankfully she never escalated into tears! Definitely not an optimal day for a haircut, but we went through with it anyway and I think it turned out great (despite being shorter than I had wanted)! Hoping she settles down and gets some rest before the weekend!
Tuesday, March 18, 2014
Reagan had an OK day today. She's not 100%, but she's headed in the right direction. Her sleep was a little more restless last night, she woke up around 4:30 and I don't think she ever sent back to sleep! By 6:30 she was up and at em! She's had A LOT of chorea today...giving her a bath was quite the challenge (she kept whacking her elbows and legs on the sides of the tub)! Lots of bursts of movements...and laughter. Definitely some crazy laughs today. Very easily excitable. Again all of her therapists just kept it low key and she was good. Tonight she did have one random cough then throw up! Not a ton, but enough to consider it an actual throw up! She also had an epidemic if poopy diapers today! Five or six! That's a lot of poo! But she's been good. Smiley and crazy laughing. Hopefully she'll be done with the craziness and all good by Friday (her birthday) and Saturday (the party)!!
Monday, March 17, 2014
Oh my goodness, I'm so far behind! Reagan slept OK last night (in her chair). She was pretty restless, but I do think she got some sleep. She was feeling a little better today. Very serious, but no crying. She tolerated speech and school but she was sensitive and easily excitable so everyone just kept it very low key. She was a little laughy tonight, which is good to see, but it is still a bit crazy. She had one huge retch tonight, I thought for sure she was going to throw up, but she didn't. I was two hours late on her Zofran, so I wonder if that was it? She seemed fine the rest of the night (a little kooky, but fine). She fell asleep with clonidine and we were able to finally put her in her bed to sleep tonight!
Sunday, March 16, 2014
Today was a little bit better for Reagan. I think she slept okay (in her chair) and even though she was pretty agitated in the morning, she was fairly calm most of the afternoon/night. She still doesn't want to be messed with, doesn't like diaper changes, and is very tense but if you just leave her in her chair and let her be, she's okay. She's definitely spent way too much time in her tomato chair the last couple days so hopefully tomorrow she'll be feeling better and not mind being held or spending time in her beanbag chair! Tonight she seemed a little nauseous, she was doing a lot of tongue movements so we're just keeping the Zofran going around the clock and hoping that she gets over it without any actual nausea or retching! It definitely seems like the early intervention with Zofran and oxycodone is helping (knock on wood)! It's looking like brother might be sick again! He's never really cleared the sinus/cough junk that he's had over the last couple weeks, but this morning he had a throw up at church and then tonight he was fighting sleep again so we checked him for a fever (because he felt hot) and in one ear it was 98.6 and the other 99.5! I'm wondering if maybe he's got another ear infection? Certainly could have been triggered by the constant runny nose and congestion! Please keep it in your prayers that both kiddos get to feeling much better soon!
Saturday, March 15, 2014
My girl slept well last night but we found her completely turned upside down and wide awake when we got up this morning. And she was NOT happy! I immediately gave her a dose of oxycodone and she was stable. Didn't want to be messed with, was extremely tense, but OK. Then just after noon the crying started! Gut wrenching cries, holding her breath til she turned purple over and over again cries! She definitely seemed to be in serious pain! The medication helped a little and she slept off and on, but she kept waking up crying! Needless to say, it's been a miserable day for my girl. I'm hoping and praying that she'll be able to get some sleep tonight and wake up tomorrow feeling much better!
Friday, March 14, 2014
Reagan slept well (I think), but this morning she was already wide awake but so still I couldn't even tell she was awake until I went in her room! She was actually ridiculously still all day today! This is very unexpected when you consider the last several days she was getting more and more tense by the day! She was still a little sensitive, she'd flinch and close her eyes if you made any sudden moves or blew any air on her! We did take her for a walk to the park (with her brother) and despite not being a fan of the wind, she seemed to enjoy it overall. It was so nice to see her SO relaxed and still. With her almost constant chorea, it's a rare occurrence! We were definitely maxed out on sweetness today!
Love this pic! The flash came on and made her flinch but look at this cuteness!
A baby squirrel that we saved from neighborhood cats today and took to a wildlife rescue!
Thursday, March 13, 2014
Reagan slept well last night and woke smiling once again! She's been a darling again today! Still super cold and clammy hands and feet...and super sweaty back! And seriously long stringy boogies! Poor girl, she and her brother still have runny noses! Her body is tense to the point of being shaky with clonus at times (and she is definitely sensitive to sounds and air), but her mood has been great! There are definite signs that things are "off", but hoping we can stay on top of it and prevent any drastic decline! Please keep our girl in your prayers!
Brother at the park! He's fearless on the slides but is terrified of swinging now!
Wednesday, March 12, 2014
Reagan slept well last night but she was a little restless. She's been slightly tense today, but she's done well with her therapies. Temperature regulation has definitely been off...her feet have been crazy cold and clammy, while her back has been super hot and sweaty! She's still smiling from ear to ear though, so that's great! The weather today was nice but a little windy, so we took Reagan and Ryan for a walk to the park and just put Reagan's wind/rain canopy on (that kept the cold breezes out)! She seemed to enjoy it and it was nice to get out! She and her brother are both still very congested, so it looks like another night of Vicks vaposteam from them both! I did hear back from the GI doctor about the results of her HIDA scan...normal! In this case normal isn't necessarily good, it almost would have been a relief to have her gallbladder be at the root of all of her pain/nausea for the last 4 yrs (because then you can just remove it and proem solved)! So it's looking more and more like CVS (cyclic vomiting syndrome), for which there's really no cure. Thankfully she does seem to be showing a little improvement with our early intervention, so maybe that's the key? Hoping we continue to see improvement in my girl (especially for her birthday and party next week/weekend)!
Tuesday, March 11, 2014
Reagan slept well last night and woke up sweet again this morning. She had PT this morning and she did well with that. Then she had OT this afternoon, she almost dozed off right before, but she got a second wind and did great. Slightly more tense today but that may be because it was her first day awake with a full house of visitors!! Mike's sister came to visit for spring break and we've got a house full of kids! Ryan is going back and forth between ignoring them completely and actually playing with them! He went to the park with them this afternoon and enjoyed the actual park time but not necessarily the trek there and back! Ryan still has a super runny nose (and loose cough) and Reagan had a ton of yellowish/greenish snottys yesterday but not as much today. Hoping they get over this junk soon.
Monday, March 10, 2014
Reagan slept well last night, maybe we all slept a little too well, because I didn't wake up when my 3am alarm went off to change her over to pedialyte! I woke at 6:30am and after saying A LOT of cuss words, I finally switched her from formula to pedialyte (for her HIDA scan). I couldn't get a hold of anyone til 8:30, but they thankfully were able to push it back to 12:30pm! I was really relieved because I could tell it was going to be another sleepy day (which would be the perfect day to do this sort of procedure)! Reagan slept the whole way there and even through the FIRST iv attempt! Ugh. For the second, they got a nurse from the PICU who used ultrasound to find a vein and that one was a piece of cake (but she did wake up for that one)! She was good though and she stayed awake during the first half of her scan! I almost wish she would have been asleep during this part because it was pretty claustrophobic and she kept trying to crunch up and bumping her head on the machine! She was good though but she did seem to get a little nauseous during the last half of the procedure where they inject the stuff to make the gallbladder contract! Her tongue action definitely picked up but thankfully she fell asleep for the last 20min and then slept the whole way home and kept sleeping til about 7pm last night! She was awake til 11:15 or so but went back to sleep with the help of clonidine! Such a good girl! Glad to have this test out of the way (and even better to have it on a sleepy day)!
Sunday, March 9, 2014
Reagan was fighting sleep again last night. We put her in bed around midnight, but she didn't sleep long and was up and kicking around at 3:30am so I got up and gave her a dose of clonidine. That helped her to finally doze off and get some sleep! She woke up super smiley and sweet again! Such a darling girl. She looked tired all day but never dozed off until 3:45pm. And then she was OUT! She slept like a rock in her bean bag chair until 11pm when I saw her stretching so I picked her up and put her in bed...then she was awake! Big giant eyes! So I picked her up and held her for a bit. She wasn't even the tiniest bit sleepy, but clonidine helped her to finally doze back off. What a sweet girl! She's scheduled for a HIDA scan early tomorrow morning (checks the function of your gall bladder). A little boy we know in Houston who also has mito has been having episodes of pain and nausea similar to Reagan's for years now and they just found out (with this scan) that his gallbladder is the culprit and not functioning correctly! Reagan's doctors agree that it's worth checking out! Please keep her in your prayers that everything goes smoothly! Looks like it might be a sleepy day, so that should help!
Saturday, March 8, 2014
Reagan did not sleep well last night, in fact, I'm not sure if she slept at all! She was very restless and kicky, but was full of laughs (especially in the morning)! She was smiley and sweet, so glad to see a happy girl! Thankfully we had a nurse, since we were so worn out from the last couple of days, and because my mom and I had tickets to go see Wicked! Very exciting (special thanks to my husband for surprising me)...I don't remember the last time my mom and I were able to go see a musical! We got away early, ate lunch at a really great restaurant right off the UT campus and then got to the theater with time to spare! It was such a great production! So glad I finally got to see it (I've wanted to see it for years)! Reagan was a angel while we were gone and she continued to be super darling all night! She doesn't seem to be getting tired though, so no idea if she'll sleep tonight! Brother is a snotty mess again, hoping it's just allergies and he doesn't infect his sister!
Loving on grandma! She's a grandma's girl!
Friday, March 7, 2014
We're home! I won't lie, it was a rough night (with EEG technicians coming in time and time again to fix loose electrodes)...but even with the noise of the compressed air, my girl continued to sleep! So that was a very good thing! She woke up just before 7 and was raring to go again. Very kicky and tense, but OK. These are definitely not "good days", but they are a far cry from the bad days she was experiencing just a month ago! So maybe things are finally working? Maybe we're headed in the right direction? I certainly hope so! We got out of the hospital just before noon and came home to chill. It's been an exhausting 24hrs! Reagan never dozed off, but I did! Ryan and I both took a nice long nap this afternoon (I'm a little worried about him because he didn't sleep well last night and was runny nosed all day today)! Reagan's still dealing with the nasty hair gunk! I'm sure we'll be picking it out if her hair for the next week or so! Hoping everyone can get some good sleep tonight...especially my restless little girl (those legs have been moving a hundred miles a minute)!
Definite tongue action going on today...not sure what that's about!
Thursday, March 6, 2014
Reagan slept well last night. She dozed off early and was so peaceful, I was afraid to move her so I left her in her tomato chair! She was still asleep this morning when I had to get her up to go to the hospital for her EEG. She was tense but OK (I don't think she appreciated being woken up)! She was very kicky in the car...always a challenge keeping her from banging her foot on something in the car (definitely need more leg room for this long legged girl)! Once we got to the hospital, admitting sent us to the wrong room, but we eventually found our room in the EMU. Everything was very slow going but they finally started putting the leads on around 10:30am. It was a nightmare! Not sure if it was the way they keep the compressed air blowing the entire time, or the fact that we were having to restrain her, but she went CRAZY! Screaming and crying and holding her breath til she turned purple! She's had A LOT of EEGs before and this was by far the worst experience yet! Poor thing! She was sweating so much that the electrodes in the front just would not stay down (and they did an awful job at wrapping it up)! She did calm down afterward and looked like she might doze off, but no! It wasn't until an hour or two later when she was starting to get aggravated again so I gave her clonidine, that's what helped her finally rest a little. When she woke back up we took her into the snoezelen sensory room two doors down! Very neat! We need some of these fiber optic lights at home! The rest of the night was pretty uneventful. Reagan's head was rewrapped for the third time (and was already back off by bedtime)! She fell asleep on her own around 9pm. She's been a little restless but she's still asleep! Hoping she sleeps through the night and we have an uneventful night! (She did push the seizure button once with her toe and had all of the nurses running in thinking she had just had a seizure!)
Wednesday, March 5, 2014
Reagan slept so so last night. I woke around 5:45am to find her completely upside down in her bed (no telling how long she had been awake)! I tried to just tuck her back in, but she had her knees pulled up to her chest, and there was no laying flat for this girl! I put her in her chair and I laid back down for a while longer. Meanwhile her brother woke up crying (setting the stage for his entire cranky day). Reagan was still very tense and agitated, but she somehow managed to hold it together all day! She tolerated OT, did better with speech, and OK with the teacher (she still really wanted her hand in her mouth a lot)...but overall it wasn't too bad of a day (way better than expected) and she fell asleep early on her own! Tomorrow we're heading to Dell for a routine 24hr EEG. Hopefully Reagan is cooperative! First time admitted to this hospital so that should be interesting!
Tuesday, March 4, 2014
I know, I've been horrible about posting! I'm on the day behind schedule right now! Reagan has been OK. Getting more tense, that's for sure. Today she's had her hands in her mouth A LOT! Almost to the point of gagging herself! Temperature regulation is a bit off now, hands and feet have been clammy here and there, and she's still very congested. She's also been sensitive to talking! There have been several instances where she almost started crying because we were talking! Not much of a fan of her brother's fussing either, but who is?!?! She had PT and speech today and did well with both. Tonight she was pretty tense and getting a little vocal/agitated but loosened up with clonidine and fell asleep! Hoping for a good night's sleep for my stuffy girl!
Monday, March 3, 2014
Reagan had a surprisingly good day today! She slept well and woke up around 7am smiling. She's been a lot less tense in her body today, not crunching or pulling at her hair all day (like she's been for the past week or so)! She didn't seem to mind us talking, although she did seem a little sensitive to air blowing on her. Her hands and feet were perfectly warm and dry and she didn't seem to be having any temperature regulation issues whatsoever. She wasn't super smiley, but very content. She had PT very early, then OT, then speech at noon, and then school in the afternoon and she did exceptionally well with them all! The only other issue is she's been showing some signs of nausea. More mouth movements, licking her lips some and sticking her tongue out, subtle signs. She's still congested and having a good amount of sinus drainage, so it's hard to tell how much that is contributing. Tonight it definitely seemed she had some gunk dripping down the back of her throat and it was making her gag (but she never threw up...too bad because that might have cleared it)! So aroind 11pm I gave her a dose of clonidine hoping it would help her doze off and stop gagging...instead it's made her crazy! She got very agitated, startred fussing, and was crunching a lot...but some Lortab and cuddles from Daddy finally settled her down and she fell asleep! Very strange turn of events after a very calm and uneventful day!
Sunday, March 2, 2014
My girl slept well last night, snoring it up in her humid room (with her vaporizer running full steam). Her nose wasn't as runny today but she's still super congested! She's also still very tense. She was super crunchy all morning, but she did loosen up a bit with the help of some oxycodone and a warm bath. Tonight she was on edge again with brother's noise and commotion, and then our (my) talking lead her to tears! Thankfully Daddy was able to console her. There are definite signs that she's headed in the wrong direction (so we're starting the round the clock Zofran & oxycodone as needed). Please keep her in your prayers! Today was Ryan's second birthday! He didn't have the best day (crying at church, several meltdowns at home, & trapped inside because of the cold weather), but he cheered up with a bath, bubbles, & sugar! Such a sweet boy! We're having a joint party with sister in a couple of weeks...Cat in the Hat themed (which is fitting since Ryan & Dr Seuss have the same birthday)! Both Reagan and Ryan love watching The Cat in the Hat Knows A Lot About That on PBS!
Saturday, March 1, 2014
Reagan had an OK day today. She slept well last night, especially considering how congested she is! Poor thing! She is SO stuffy and refuses to breathe through her mouth! She's been a little more tense today. Still super crunchy, hands tangled up in her hair, but a few times this afternoon she was either borderline tears or she actually did start crying! Definitely getting more sensitive by the minute. We took a nice walk this morning down to the park. Ryan fell asleep before we got there! We waited for a while, walked around some more, and finally he woke up and played a little. It was a nice day for it, warm but overcast so not too hot! Reagan was good and seemed to enjoy getting out! Glad we were able to get out today as the weather is supposed to take a turn for the worse tomorrow!