Saturday, February 28, 2015

Glad to be home!

Reagan was up A LOT last night. In fact, the only time I actually saw her sleeping was from 12-1am! One hour! She was also fussing a lot and would not just lay in bed...I had to keep jumping up (off of my extremely uncomfortable sofa bed) to console her. It was NOT a fun night (especially considering she had done this same thing, to a lesser extent, the night before)! We made it through though and eventually saw the doctor and got the good news that her EEG looks great! It's obviously still a little slow (because of her developmental delays) but there is no sign of epileptiform activity whatsoever (when she's awake or asleep), so that's always great to hear! Just keep on keeping on. What we're doing is working, so no need to make any changes. We came home around 12:30 and gave her a bath to try to wash some of the gunk out of her hair (we'll be picking that stuff out all week)!! She's been super sweet and wonderful! Love this precious girl! I'm SO looking forward to sleeping in my bed tonight! Just hoping my girl feels the same!

Friday, February 27, 2015

"Routine" 23hr EEG

Last night was a looooong night! Reagan would not sleep! She didn't react well to clonidine and refused to lay in bed. We moved her back to her chair where she did eventually doze off. That was short lived though and she was back awake in no time...moaning. She didn't just want company, she wanted to be held! I'd get up and try to console her in her chair...nothing. Still very vocal and upset.  But when I picked her up, she'd instantly fall asleep! Unfortunately, the second I'd put her back down, she'd wake up! Very frustrating. So needless to say, neither of us got much sleep last night and we've had a busy day today. This morning we came in to the hospital just before 10am for Reagan's annual 23hr EEG. They didn't hook her up til 12:30 or so, but they were very accommodating and let her stay in her chair the whole time and we miraculously avoided a major meltdown (when she's already sensitive, that compressed air they use typically sends her right over the edge)! She's been really good all day actually. I've had to keep her left arm restraint on, because she wants to either grab her head or put her hand in her mouth (and I noticed this morning a big crack right along the knuckle of one of her fingers from putting it in her mouth too much)! Of course, now she's just putting her right hand in her mouth too much! She's been such a trouper all day. Still a little kooky, but keeping it in check. It's 11pm right now and she's still going strong (even after clonidine). Hoping she'll fall asleep soon! I'm exhausted! 

Thursday, February 26, 2015

Still kooky

Reagan had another very vocal/kooky sort of day today. She woke up right around 6:30am and then would not go back to sleep and definitely preferred having someone by her side. So I reluctantly got up and kept her company until her nurse got her at 8. She had OT this morning and she did really well with it. Then during PT she got increasingly vocal/kooky, but still got some work done. And then this afternoon, well, she was just not having school/vision (for the second week in a row)! She got very agitated/vocal and basically let us know, she was NOT in the mood for it! Thankfully her teacher and vision teacher were able to take the time to look more closely at her eyegaze device so not all was lost. Tomorrow is going to be a crazy day. I'm praying Reagan will be more calm tomorrow for her 23hr EEG, especially since in general she's not a fan of the whole process of putting the electrodes on. We have to be there around 10am and they'll probably start the process of getting her wired up around 11. Please keep her in your prayers! Ryan will get to spend the day with Grandpa and then Mike will come home with him for the night. Then Saturday morning Mike will come back to pick us up! Hoping for an easy going CALM day for my girl!


Wednesday, February 25, 2015

Vocal and tense

Reagan slept in again this morning. Last night, not long after we transferred her from her bean bag chair to her bed, she made a few moany/fussy noises, but then stayed asleep. This morning we peeked in at her and she was smiling in her sleep. She woke up a little kooky, but still smiling. Very crunchy and tense in her body today. Also VERY vocal. Lots of vocalizations all day today...kooky vocalizations. But she's also been a little sleepy. This morning she actually dozed off in her wheelchair after about 20min of speech therapy! Her nurse transferred her to her bean bag chair where she continued sleeping until right around noon when we had to get her ready to leave for her already rescheduled orthotic appt. She got a little kooky/vocal in the car and at the appointment, but she was OK. We got some new interesting elbow and knee immobilizers (the elbow immobilizers to use on bad days to keep her from biting her hands and the knee immobilizers to work on standing without having to put her in her stander)! They are very different from her old ones and I'm curious to see how we like them. They are made out of foam and stretchy (ace bandage-like) straps so they are a lot thinner and lightweight than her old canvas ones (pedi-wraps), but they have very rigid metal stays in them and even extra ones that you can add onto them. Sounds promising...we'll see. We, unfortunately, got a chance to try them out tonight. She's been super crazy vocal biting her hands all night. Her tummy is giving her major issues. I can hear it gurgling up a storm and she's having machine gun gas, poor thing, she must be miserable! Not sure where we're headed but hoping she's stable by Friday morning for her 24hr EEG! 

Tuesday, February 24, 2015

Sleeping beauty

Reagan slept in a little this morning, but when she woke, she was still sweet and smiley. Still a little sensitive (slightly kooky), but OK. No therapies this morning, so she just took it easy. Maybe a little too easy. She was looking a little sleepy all morning and then finally right around noon she dozed back off. And she was OUT. She just kept sleeping! We had to cancel both OT and school/vision. She was out. Finally around 4:30pm her nurse changed her diaper and she woke up a little. We pretty much forced her awake because she needed a bath. We were able to give her a bath and get her changed and then she dozed back off and slept the rest of the night. Such a sweet girl. She looks like a little sleeping beauty! (I wanted to take a picture but I was afraid I'd wake her up!) Instead I'll leave you with a pic of Ryan forcing us into his tent (again)! He got Grandpa in it this afternoon and then us tonight!



It's tight in there! Not big enough for one adult, let alone two adults AND a toddler!

Monday, February 23, 2015

Sweet but slightly sensitive

Reagan slept well again last night and woke up still sweet and smiley. Definitely a little less relaxed today though. There were a couple instances where she almost lost it! She did fine with speech this morning and then we were about to brave the cold and go to her orthotic appointment when just talking to her nurse completely set her off! Her eyes got all red and filled with tears! No actual crying, but close. So we canceled the appt and just stayed in (it was too cold to drag her out anyway). She did have OT after that and did fine with that as well. Then tonight just as her nurse was leaving, I don't know if it was the talking or what, but she almost cried again! Eyes filled with tears and she looked all sad! I don't know what that was all about, but she was fine for the rest of the night. Sweet and cuddly. Hoping for another good night's sleep tonight and smiles again tomorrow!

Sunday, February 22, 2015

Still relaxed

Reagan had another good day today. She slept well last night and woke up super sweet and calm again today. I admit it, we do get a little nervous when she's SO relaxed and calm, but hopefully the good days will continue. She's still very relaxed and a little chokey at times. Super sweet though. Loving these relaxed days for my girl. She had a tense sort of week, so it's nice to see her able to relax. Just trying to keep warm tonight. I'll leave you with a pic of my girl in front of the fire...

Saturday, February 21, 2015

Super calm

Reagan slept well last night but when I went in to see her this morning she was laying there wide awake and trapped on her tummy! At some point she had rolled over and couldn't turn herself back over. And of course the way she was laying was pushing funny on her button causing her tummy to leak all over the bed! Poor girl! She was soaked! She was super sweet and calm though, so I just changed her and she was good. She's been very calm and quiet all day. I've tried my best to get a smile or laugh out of her all day...nothing! She was such a good girl though. Very easy going. Very quiet. Very relaxed. Maybe a little too relaxed! When I would pick her up and try to hold her, she kept choking on her spit! She was fine sitting in her chair, but I hate to keep her in her chair all day! Not to mention, she kept leaning her head way over to the left, I was afraid she was going to get a crick in her neck! She never dozed all day and then tonight she wasn't even really falling asleep despite being up til 11:30pm. Finally, Mike went and laid down with her and she eventually (sort of) dozed off. She kept opening and closing her eyes, but I think she's going to stay asleep! Hoping she wakes up just as sweet and wonderful tomorrow!

Friday, February 20, 2015

Calm

Reagan slept well again last night and woke up still serious but calm. She's had a pretty laid back day today. She only had one therapy, a make up session of speech, but she did well. She was a sweet girl, still not smiley, but she would give us laughs when we provoked her! Lots of laughs actually. She was very snuggly, her nurse got some good cuddles, but I had to try my best to keep my distance. I've been sneezing A LOT and feeling pretty horrible for the last couple days now...hoping it's just allergies but I don't want to take any chances. Hopefully it'll be better by tomorrow though, since we're still nurseless on the weekends, so that means...tag I'm it.

Thursday, February 19, 2015

Serious but better

Reagan slept well last night and had a better day today. She's still been very serious, but better. Much more relaxed and calm. She's still sticking her tongue out a lot, but doesn't appear to be nauseous. Still a little burpy though. We took some pics of her this afternoon in one of the many new outfits Grandma got her! We were even able to get a few laughs out of her if we made really silly noises! This afternoon she had school and her teacher said she was really doing well using her hands! She's such a sweet girl. So glad she seems to be feeling a little better again!

Wednesday, February 18, 2015

Tense day

Reagan slept well last night (I think)! I woke up around 7:45am to her kicking the side of her bed, so I'm guessing she was asleep before then. She was very crunchy and tense. No smiles whatsoever. She did loosen up a little but really just preferred to be left alone. Needless to say, we went ahead and canceled her therapies as well as her orthotic appt (we were supposed to go pick up her new elbow immobilizers). She seemed a little gaggy today so her nurse gave her some Zofran. She dozed off and on all day. Then tonight she was awake for a couple of hours before dozing back off. I sure hope she sleeps tonight and wakes up feeling better tomorrow!

Tuesday, February 17, 2015

Busy & sleepy

Reagan had a good day today. She slept well last night and woke up sweet and smiley this morning. She's had an easy going morning but this afternoon was super busy! She had OT and spent some time in her stander and then had school/vision/speech all at once! Well, kinda all at once...vision came first and overlapped with school, then vision left and speech came and was here for the last half of school! Reagan did really well with it all, but promptly passed out as soon as they left! She slept the rest of the afternoon and then just kept sleeping all night! We eventually moved her from her bean bag chair to her bed but she was out cold! I even changed her diaper without her moving a muscle! Poor sleepy girl! We wore her out!

Monday, February 16, 2015

Sweet again

Reagan finally slept in her bed last night. Of course, she was up by 5am, but we'll take what we can get! She's been super sweet again today. She had a busy day of therapy with speech, PT, and OT! She did really well with her eyegaze this morning answering 8/10 questions her therapist was asking her correctly! During PT she did some good rolling and during OT she did some side sitting (that lead to a poo) and then played on the ipad! She's still very crunchy, but her therapists were able to work around that. She was just so laid back, it was a great day for therapy. Hopefully she'll have many more good days this week!


Sunday, February 15, 2015

Much better

Reagan had a much better day today. Much better. She's been super sweet and wonderful today. Very smiley. So glad to see her feeling so much better. She's still chewing on her fingers and crunchy, but her demeanor is just so much more relaxed. She's been super laid back and easy going. Not at all sensitive, loud tv and brother didn't bother her in the least. I'm really hoping we can get her to sleep in her bed tonight. She's been sleeping in her tomato chair for days now...

Saturday, February 14, 2015

Enough with the tension!

Happy Valentines Day! Reagan slept well last night, so that was awesome! Today she's been very much on edge and tense all day. Again. This morning we had take out from our favorite breakfast place in Austin...Kerbey Lane! Best pancakes ever! Ryan loves their cinnamon roll pancakes and he even ate a few pieces of bacon! (He never eats meat!) Reagan continued to be tense and crunchy all day. Constantly cramming her fingers down her throat, we had to put her arm restraint on her to try to keep her from choking herself. Still very needy and sensitive. Made for an interesting night! Mike was cooking scallops and steaks for our valentines day dinner and both kids were super high need and giving us trouble! Ahhhhh a romantic dinner with both kids fussing and crying from the other room! At least the food was good! :) Hoping Reagan will actually sleep tonight!
I'll leave you with a pic from a few months ago! It's too cute to not share again...

Friday, February 13, 2015

Still tense

Reagan slept in her chair last night but then proceeded to wake up every hour or so from 12-5:30 and then both she AND her brother were up for the day! She's still been vocal and crazy off and on today, but maybe a little less like she is going to cry. Although, when the teacher came today to work with her, she clearly made it known that she was not having any of that! (She just got super vocal and was doing a high pitched stressed squeal!) Today she was very similar to yesterday, except she seemed to prefer being held. Very needy. She was also sticking her tongue out a lot again but today she seemed very burpy/refluxy (of course it could've had something to do with her fingers being jammed down her throat)! Still very tense in her body. I think her tummy is definitely bothering her. She's been clenching everything in, but today the gas has been coming and it's stinky! Poor girl. Hoping she can relax and get some sleep tonight!
Today wrapped up Ryan's week of attending school (so they could do his evaluation before he turns 3). I was amazed at how well he did with leaving me and how cute he looked with his giant backpack on his back!

Thursday, February 12, 2015

Too tense

It's been a tense one for my girl. Well, tense and sleepy. She's also been super crunchy today. She's had several episodes where she got increasingly vocal like she was in pain and might start crying, so her nurse gave her some Lortab and she had a paradoxical reaction to it. This was the first time her nurse witnessed it and she was concerned. She freaked out for 30min or so and then finally dozed off. She was almost impossible to hold today because of the extreme crunchiness and she just seemed to prefer her tomato chair. She wasn't nauseous, but she was sticking her tongue out a lot and of course cramming her hands down her throat. Not quite sure what's going on with her but hoping she'll loosen up and get back to her calm self. 

Wednesday, February 11, 2015

A little off & sleepy

Reagan woke up last around 4:30am fussing. Not good. She was not willing to even think about going to back to sleep in her bed and she was getting increasingly irritated. We transferred her to her chair and I gave her a dose of oxycodone and she fell back to sleep. She slept in a little, woke for a bit and was rather calm and sweet, then dozed back off. She slept the majority of the day (without medication). Even through diaper changes. Toward the end of the day, when she'd wake, she was definitely more tense and kooky. She woke again tonight but was more agitated and moany than she had been all day. Definitely seemed to be having stomach pains of some sort. Another dose of oxycodone seemed to help and she dozed back off, although she was a little more restless than before. She's asleep for now...hoping she can sleep through the night and have a more normal day tomorrow! 

Tuesday, February 10, 2015

Preciousness

Reagan has been downright precious today! She slept well and has been super sweet and relaxed. Yesterday she seemed to be getting more tense, but today is definitely the opposite. She's had this angelic grin on her face all day! Such a sweetie! She only had OT today and she did well with that. Most of the day she just spent being precious! I appreciated her relaxed demeanor because Mike was out late with a client, so thankfully none of her brother's craziness bothered her in the least! Tonight she was super snuggly and fell asleep on my lap! I love loving on this girl!
Rocking the side pony!

This is her nurse holding her! We all love to love on this girl! 

Monday, February 9, 2015

Biker chic

Reagan slept well last night and had another good one today! She had speech and PT today and did well with both. During PT we were able to get her outside on her bike! We're still having some issues keeping her feet in the pedals, but we think that can be easily solved with some shoes. Now, if only I can find some shoes to fit her high heeled AFOs! She was a little sensitive today and had several instances where she'd just suddenly let out this high pitched squeal! Thankfully she never got over excited. Her body has definitely been more tense today and her temperature regulation has been a bit off (her hands and feet have been ice cold). Hoping she can continue with the good days!

She did not want to keep her head up!



Sunday, February 8, 2015

Taking it easy

Reagan had a pretty good day today! She slept well last night and woke up very calm and laid back. Today we just took it easy and hung out with Grandma (who wasn't taking it easy, she worked in the yard trimming roses). I know I was exhausted from our day trip to Houston. Like crazy exhausted! Hopefully I'm not getting sick! This next week is a really big week for Ryan. He will be attending school (PPCD) all week getting evaluated on his speech delay in order to determine what services he might need when he turns 3. If you ask me, I think he could really benefit from being in the classroom setting with teachers that are willing to work with him, rather than at a mother's day out program where they get frustrated with him and just ignore him. Please keep it in your prayers that he does well with this experience and doesn't give them too much trouble!

Saturday, February 7, 2015

Houston walk

Reagan slept well last night and woke up this morning and she was GOOD!! We alerted our nurses (who were on standby) that we were all going to Houston and we were off! We left Austin around 9:30am and drove straight to downtown Houston for the walkathon. We got there around 1pm with plenty of time to change both kiddos and get them ready to walk! The walk started a little after 2pm, we met up with some of Mike's family and our friends, and we walked the full 5k! The weather was perfect, a little overcast and in the low 70s. We had a great time! Afterward, we drove back to our old neighborhood and met up with a couple of our old neighbors (who couldn't make it to the walk this year)! I'm so glad we were able to do that! We had really great neighbors and we miss them a lot! We had a nice dinner, hung out for a bit (Ryan was able to burn off some energy), and then we hit the road. My best friend from college was right down the road with her daughter at a dance competition and we were even able to stop and talk to her a bit before heading back! Then around 7:45pm, we finally got on the road for good! Ryan was wired and crazy for a while and then he crashed. Reagan never did fall asleep, but she was as good as gold. We made it home right around 10pm and we are exhausted! Ryan went straight to bed and Reagan followed shortly thereafter. It's time for us to crash! It was a GREAT day and I'm so happy my girl could make it! Thank you for your prayers!







Friday, February 6, 2015

Hanging in there

Reagan slept well last night (in her bed) and woke up feeling a little better today. She's had a pretty good day. Still a little stressed at times, slightly sensitive, but good. Not a lot going on today. She was supposed to have school at 3, but she dozed off right before her teacher got here and she took a little hour nap instead! We're still not sure if she's going to make it to the walk tomorrow, but we're hoping she'll hang in there! It's going to be a looooong day, but I really want my girl to come!

Thursday, February 5, 2015

What's up?

Reagan slept well in her chair last night...she even slept in a little this morning! When she woke, she was still serious and tense, but ever so slightly better than yesterday. She had OT and PT today and they both took it easy so she was fine. She's been a little stressed but we've just been taking it easy, keeping stressors to a minimum. She has been a little burpy/swallowy at times, we definitely think she's having some reflux or indigestion issues, but we'll take that over nausea. Overall, I would say she was better today than yesterday. What exactly does that mean? We're not sure. Was yesterday a really mild bad day? Is she done with that and improving from here on out? Will she be OK for the walkathon and drive to Houston Saturday???? I have no idea! Please keep her in your prayers! I would love for her to be able to go to the walk on Saturday, especially since she had to skip last year on account of a really awful bad day! Hoping she pulls through and has nothing but great days to come! If anyone would like to join us or donate to the UMDF, follow this link to our team page Rallying for Reagan.
Hopefully our girl will join us in person this year at the Houston walk!

Wednesday, February 4, 2015

Very tense

Reagan slept well last night and woke up this morning still pretty serious/zoned out. Body very tense, very much on edge, but hanging in there. I'm still not sure if these are the tense/stressed days preceding a bad day or if these are mildly off days substituting for bad days? She had laid back sessions of speech and PT...the therapy was laid back, not her! Speech really just worked on oral motor, letting her chew on a chewy tube because she was constantly grinding her teeth and obviously needing that oral input! PT just did some stretching with her. She tolerated everything just fine. Then this afternoon, out of no where, she started crying! She was upset for a little while but we gave her some oxycodone and that seemed to calm her down and she eventually fell asleep! She slept from about 5pm-7pm and woke up much more calm. Still tense, but no more tears. We kept her away from her brother the rest of the night and she did OK. She was starting to look a little tired, so Mike attempted getting her into her bed, but that was a no go! As soon as they laid down, she started freaking out (Mike said she was also getting very chokey/swallowy laying down)! Sometimes she just can't tolerate laying down with no support and prefers her tomato chair. Shortly after moving her to her chair, she dozed off on her own! Hoping she sleeps tonight and wakes up OK in the morning!

Tuesday, February 3, 2015

A little sensitive

I think Reagan slept well last night, but who knows. When I got up to walk at 5:30am she was laying in bed awake with all of her covers kicked off (and legs and arms twisted up like a pretzel)! She was quiet and content though, so I just covered her up hoping maybe she'd go back to sleep. When I got back from my walk she was still awake, so Mike just picked her up and put her in her chair. She's had a good day today. This morning she looked pretty sleepy (so maybe she didn't sleep much last night), but she didn't have any therapies so she just took it easy all morning. Then this afternoon she had both OT and school/vision therapy. In OT she got up in her stander for a while, that is, until she had a big poo. She had school/vision right afterward, she did well but they had to be a little careful with her because she was a tad sensitive. The sensitivity reared it's head again when we brought her downstairs when her nurse left! Ryan was singing the ABC's super loud and she promptly burst into tears! We managed to calm her down and she was fine, but she was very tense and zoned out the rest of the night! It definitely seems we're on the verge of bad days. Hoping she can get through this and pull out of it by this weekend for the Houston Energy for Life Walkathon! Last year we had to leave her at home with her nurse because she was having a horrible bad day, we're really hoping she can come this year!

Monday, February 2, 2015

Busy day (GI follow-up)

Reagan slept well last night until 4am when she woke up fussing. I moved her to her chair and gave her some clonidine, hoping she'd settle down and fall back to sleep (clonidine worked well last night to help her fall asleep). Not this time! She had a paradoxical reaction to it and went CRAZY! She got very upset, was flailing, biting, and just all around upset! After an hour or so of fighting her and realizing she wasn't getting any better, I gave her a dose of oxycodone and within 20min she was asleep! On a good note, when she woke up, she was her normal sweet happy self! Whew! Crisis averted! She had a super busy morning this morning with speech, OT, & PT all back to back to back! It wasn't her best therapy day, she's still really crunchy and into her hand, but she tolerated everything. Then we left around 2:30pm to head into Dell for her GI follow-up. We hadn't seen her GI doc in months and he was very happy to see how well she has been doing with the gamble we took in changing her formula back to the low calorie formula she did so well on two years ago! Of course in switching her formula, we have had to steadily increase her rate in an attempt to get her close to the same number of calories she was getting before (we have gone from 55mls/hr to 70mls/hr very slowly). So now she's getting 1400mls a day of formula, instead of the 1000mls formula +100mls water she was getting before. Fluid intake-wise, this is a lot closer to where she should be. Calorie intake-wise, it's still only about 933calories instead of 1000 (and 1000 is very low for her age/size, but she obviously doesn't require a "normal" caloric intake because of her decreased mobility, etc...). The good thing, she's been maintaining her weight well. She's still right around 47lbs which puts her in the 15% for her age and her GI doc is OK with that. So for now, we are going to hold steady at the current rate/volume and just keep an eye on her weight (checking it every 2 months on their scale). Since switching her formula, over the last however many months, we've noticed her having more good days in a row (she's going approx 2 weeks between bad days), less bad days (just one on average compared to 2-4), and no real nausea to speak of! This has been a HUGE blessing! Huge! Hoping by keeping her rate steady and not making any changes, we can ride this out for a while. Thank you for praying for our girl!

Sunday, February 1, 2015

Better

Reagan had a better day today. Sleep was better than the night before and she was a lot less stressed today. No moaning, but still very tense in her body. We've had to either keep her left arm restraint on or hold her hand most of the day to try to keep that hand out of her mouth. I'm still not sure what was going on yesterday. She seemed to be having some tummy pains, and had a pained look on her face a lot, but never went into full on screaming/crying that she would do on a bad day. Poor girl. I'm just glad to see her feeling better today. Hoping for continued improvements and a good week this week.
He loves it when Reagan kicks at him! He sits under Reagan's feet and waits for her to kick him! He'll purposely move closer just so she can reach him (and she's happy to oblige!)