Monday, August 31, 2015

Bad day

It was a rough night last night and a rough day today! Definitely a "bad day", but not as bad as they sometimes are. So when she was miserable...she was pretty miserable!!! But there were a few times, once this morning from about 8-10am and again this afternoon from 12-1 where she was awake and seemed OK. She was calm, relatively still, and even a little laughy at times. But then the pain (or whatever it is) would set in and she'd be moany/crying until we gave her some sort of pain med. Unfortunately, nothing has worked for too long. I think 2hrs max and usually 30min-1hr...that's not nearly long enough. Her nurse kept her on the floor the entire day, not because her temp was off (although her hands/feet were still cold/clammy), but because when we laid her down at 8am she almost immediately calmed down and relaxed. Plus it was good for her to spend some time out of her chair. Most bad days, she's in her chair almost nonstop. We did keep her left arm restraint on all day today because she was very bitey...especially with that hand. For the right hand we just held it or kept it under a weighted blanket. She did doze off and on throughout the day, with the help of meds, but not nearly as long as we had hoped. She was also holding her pee, she had less diapers than usual during the day but then tonight she didn't go until I finally helped her with the warm water trick! It was a big one though so hopefully that will help her sleep! She eventually fell asleep in my arms and Mike was able to move her to her bed. I would LOVE for her to sleep in her bed tonight, but I'm skeptical considering she's pretty much been getting pain meds around the clock and every time I go in there to give her her normal pm meds, she moves and crunches up (but keeps her eyes closed). Praying for a better day for my girl tomorrow and a good night's sleep tonight!

Sunday, August 30, 2015

A bit off but still smiling

Reagan woke up this morning around 3am, she was very vocal. I changed her and tucked her back in bed, but I'm pretty sure she never went back to sleep. Finally around 7am, I got up and moved her into her therapy room. She promptly sweat through her clothes sitting in her tomato chair. We moved her downstairs and set up a nice cushiony pallet for her to roll around on and that's where she spent the entire day! She's been very kicky, squirmy but good. Chewing on her hands a lot (maybe because she can't get them tangled in her hair anymore)! Tonight she started up with some crazy laughs. She's definitely a bit off. I started giving her pedialyte flushes today, so hopefully that might help with whatever is going on. She did doze off with the help of clonidine and is in her bed asleep at the moment...let's just pray she stays that way!

Saturday, August 29, 2015

Still good

Reagan slept well last night and even slept in a little this morning, but woke up smiling and in a good mood again. We had a new nurse orient this morning. Not sure yet if she's a good fit, but we may find out as we have multiple nurses out this next week because of Labor Day weekend and we need someone to fill their shifts! Grandma came in last night so both kiddos are pretty happy about that...lots of Grandma time today. Tonight Grandma stayed with Reagan while we took Ryan to a baseball game. He ate at least half a giant bag of cotton candy, so yeah he had a good time! We did have a super loud annoying woman behind us that took some of the enjoyment out of the game, but overall we had a good time. Tonight Reagan was having some temperature regulation issues, so we couldn't really let her sit in her tomato chair at all and we had to either hold her or keep her on a pallet on the floor. I think I'll definitely start giving her the pedialyte tomorrow. Everything is still good but there are some signs that we don't want to ignore! Hoping for lots more good days for our girl.

Friday, August 28, 2015

Hoping for a good weekend

Reagan slept well again last night waking up around 7:45am this morning. She's still super sweet and smiley today. Today has been very similar to yesterday. Still pretty crunchy, a little sleepy at times, but a little more vocal/moany (especially when anyone tried to get her to work today...during speech and school)! She's also been little more licky/mouthy and putting her hands in her mouth a lot...but still good. Hanging in there. Hoping she can have a good weekend!

Thursday, August 27, 2015

Crunchy cute girl

Reagan has had a good day today. She slept well last night and woke up super sweet and darling this morning! That hair...looks just as cute this morning straight out of bed as it did right after getting cut! It's nice because it's just long enough to pull back if we want, so she really has several ways she can wear it. She's still been pretty crunchy today. She had PT this morning and was trying to doze off during therapy. She did doze off shortly thereafter and then slept most of the afternoon (missing OT and school)! She woke up around 5pm and then was awake til about 10pm. She still looked pretty sleepy most of the time, with her eyes half closed and crunched in a ball. But she was restless and it took her from 9-10 to finally doze off completely. Daddy was able to make the transfer to her bed and she's laying in bed in a little ball as we speak. Hoping she can get another good night's sleep tonight!

Wednesday, August 26, 2015

Hair cut at last!

Reagan slept well last night waking up this morning around 7:30am. She's been in a good mood today. Very sweet and laid back...still very crunchy. She had speech this morning and again the crunchiness is not really compatible with use of her eyegaze computer, but they found other things to do! She also had PT. She's still really concerned about her right leg turning in so we're going to see about getting her yearly hip/scoliosis x-rays moved up a little. Really hoping it's just a tone issue and nothing is out of socket!! Today was d-day for her hair! We finally got her in and got it cut! This time we decided to take her tomato chair with us and we were able to fasten it to the chair in the salon so that we could sit her down and then have better control over her head and body during the haircut. Thankfully we were able to get the same lady that did such a great job on her hair over a year ago and we were super happy with the outcome! A bob really suits my girl and now she can't get her fingers tangled up in it anymore!! Today her temperature control issues seem to be completely resolved. Hoping for a good night's sleep and another good day for my girl tomorrow!!
We kept it slightly longer than last year's and it's perfect! (Hard to get a pic with Miss crunchy today!) 

Tuesday, August 25, 2015

First day of 3rd grade!

Reagan had a good day today. She's been a little crunchy and had some temperature regulation issues (sweaty and cold hands/feet), but she's been super smiley and happy. A lot more quiet than yesterday. When she first woke up she was a little gunky in her throat, but she cleared that fairly quickly. She's been a little mouthy/sticking her tongue out a lot again today, but not at all nauseous so that's good. She had a busy day of therapy and school today. She had PT in the morning, OT in the afternoon, and then school/vision! Her PT is a little worried about how her right leg is looking in her stander.  I think we may need to get those leg/hip xrays sooner than we were planning. OT worked a lot with her on trying to get her to open up (since she's so crunchy) and in sitting. She did well. Then today was her 1st day of 3rd grade (homebound)! We've never actually done a 1st day of school picture but today we did! We took 1000 pics or so to get a few keepers!! :) She did really well with school and vision therapy as well. Tonight she's been a little more sweaty, so I've kept her on the floor letting her roll and kick around. She's still got a huge smile on her face! Hoping she can get another good night's sleep tonight!!


Monday, August 24, 2015

Rallying for Reagan

Reagan slept well last night and woke up a sweet girl this morning. Still very laughy...especially to mommy...but smiley and sweet. She only had one therapy today speech this morning and although she wasn't super into her eyegaze computer (she was a little too crunchy for it), she did well with her iPad! She's been very into her hair and hands again, but what's new! I did want to mention that we're less than a month away from the UMDF Central Texas Energy for Life Walkathon! This year it's Saturday Sept 19th at 9:30am in RoundRock at Old Settlers Park. We'd love for any of you that are local to join team Rallying for Reagan! If not, you can still donate! The UMDF funds so much valuable research...our only hope for a cure!

Sunday, August 23, 2015

Thank God for laughs

I woke up at 5:45am this morning for my run beyond relieved to find that Reagan was still asleep. We tried her in her bed last night, but it just wasn't working, so she slept in her tomato chair. Actually even when I got back from my run, everyone was still sleeping! She woke up with a squeal around 7:30am, but she was all smiles! THANK YOU GOD!!! Seriously. Whew! We are out of practice and just can't handle watching her suffer through those bad days. She's been all good today. Definitely more kicky and into her hands than yesterday. Her hands and feet (and nose) are also cold but thankfully her body/core temp is still good. Super laughy. Lots of kooky laughs, but we'll take kooky laughs over tears any day! Of course when it came to bed tonight, all she wanted to do was laugh and laugh and laugh! Finally clonidine seemed to do the trick, so we're hoping we all can get a good night's sleep tonight!!

Saturday, August 22, 2015

Awful night, really bad day

Reagan had an AWFUL night last night. Lots of crying. She first woke up around 12...Daddy tried laying down with her but that didn't help. At 12:30am she was crying again so I got up and changed her and moved her to her chair. A dose of oxycodone eventually helped her to doze back off. She woke back up around 4 and was crying again. I got up with her again, changed her and picked her up. She immediately settled down and fell asleep. Unfortunately I can't sit on the floor holding her for too long because of my back issues so I had to move her back to her chair, where she of course woke back up crying! Eventually a dose of clonidine helped her to fall back asleep and we all slept til right around 7:30am. No nurse on the weekends anymore...GREAT...of course when "we had a nurse" she still wasn't showing up so I guess it's not much different. Not that I would've trusted that nurse with my girl on a day like today. It's just hard to be up most of the night and then deal with the same thing all day! It's been a day of many tears. The gut wrenching tears that really break your heart!! Poor baby. I have no idea what has caused these days to come back, it's awful! I SO want them to go away again...for good. The crazy thing (that's not at all like previous bad days) is that her body is not super tense, if anything she's been pretty still with her hands to her side, and she's also thrown in laughs here and there throughout the day...both very unusual for bad days. Temperature regulation is fine...she's got super toasty hands and toes...if anything she's felt a little warm to me all day. Medications aren't working very well. Sometimes she gets relief for an hour or two, sometimes not at all. Not good. Needless to say, it's been a looooooong day for everyone. Tonight she seems to be mellowing out a little. Even falling asleep on her own without any medication...only to pop back awake 30seconds later (laughing). Super restless. Hoping she can settle down and actually fall asleep (and stay asleep) tonight. Please keep our girl in your prayers!

Friday, August 21, 2015

She laughed...she cried!

Reagan woke up this morning around 5am and was vocalizing here and there. I waited until 5:45 to go in and get her and found her turned over on her tummy essentially trapped! Poor thing! I turned her over and she was very hot (not sweaty just hot), so I changed her out of her long sleeve pjs and moved her to her chair in her therapy room. Around 6:15 I finally went and laid back down but not for long, at 7am she was vocal and Mike thought she might escalate (she had a tear in her eyes) so I got up and sat down beside her and held her hand...that seemed to help for the time being. She did get upset to the point of tears when her nurse and I were talking first thing this morning but that was short lived. She seemed a little groggy and almost fell asleep during her only therapy of the day speech, you could tell she was tired but she just couldn't fall asleep. Then around noon she had two random outbursts of crying but a dose of oxycodone helped her to settle down and take a nap. This afternoon she was calm but grinding her teeth and whimpering a lot. Lots of random tear drops throughout the day but not a lot of long crying spells and we were even able to get some laughs and smiles. Very strange. Something is bothering her but we aren't quite sure what (although tummy is usually our first guess). Tonight there was more crying. While ibuprofen didn't seem to do a thing, oxycodone helped her to settle down. Tonight clondine and some mommy cuddle time did the trick and she's in bed asleep at the moment. Something tells me this will be short lived, so I'm going to do my best to get to sleep ASAP! Please keep my girl in your prayers!!

Thursday, August 20, 2015

Less kooky but still on edge

Reagan slept well last night. Actually both kids didn't wake up til 7:30am ish...woo hoo! Reagan woke up doing a lot of mouth movements (licky and swallowy and even a little burpy) but not gaggy. She's been a little less kooky today. Still vocal but not quite as much. Another big poo this morning (what's up with that). She had PT and OT today and did pretty well with both. Tonight she seems a little more sensitive/on edge than before. Thankfully we had a nurse from 6-10pm so we were able to keep her up separate from her brother so she could relax. She dozed off just before 10 and Mike was able to transfer her to her bed. Hoping she can sleep tonight and wake up feeling better tomorrow!

Wednesday, August 19, 2015

Kooky vocal

Reagan slept well but woke up a little early this morning, something she tends to do when she sleeps the entire day before! She woke up quite vocal and has had a vocal sort of day. We definitely think some of it is linked to tummy/gas pains, since she's had 3 big poo blow outs today as well as her fair share of gas! Both speech and PT had to take it easy this morning because she was so kooky/vocal and then half of PT was used to clean up poo number 2! She's otherwise been pretty good. Not super smiley, but not serious either like yesterday. A lot of today was just spent trying to not escalate her kookiness! Not sure where she's headed with this but hoping she can stay good!

Tuesday, August 18, 2015

Oh sleepy day

Last night Reagan slept like and log...and then just kept sleeping! That's right, today was a sleepy day! Thank you God! I'm hoping that the resurfacing of the sleepy day means that we will forgo the bad days this go round (or for good)! She slept all morning (even through diaper changes) and didn't even wake up when we put her in the car to go to her long awaited PM&R appt (we've rescheduled it many times). She slept the whole way there...both of them were sleeping actually. They both woke up when we got there but thankfully she woke up in a calm (albeit crunchy) mood. Pretty serious, no smiles, but calm. She was good during her entire appt even while the doctor moved her legs around, her tight ankles/feet, and we talked about systems to help in lifting her. It wasn't until the very end that she sported the pouty lip and shed a solitary tear! We managed to keep quiet and she settled down. Afterward we headed over to radiology downstairs to get a quick bone age (for her endocrinology dr). Reagan did great and then dozed most of the way home and promptly passed right out as soon as we got her home! And she's been sleeping ever since. Every now and then she'll make a noise and move around a little, but she dozes right back off. By the way, all temperature regulation issues are now gone! As we've been noticing, the sleepy days tend to hit a sort of reset button for her and her hands and feet have been nice and toasty with no sign of the back sweats! Hoping she wakes up well rested and happy tomorrow (we still need to go get her endocrinology labs done but just haven't found the right moment)!

Monday, August 17, 2015

Super smiley

Reagan slept well again last night and woke up super smiley once again! She's been in a great mood today. Still crunchy and having major temperature regulation issues (cold/clammy hands and feet and sweating through her shirts), but oh so smiley and sweet. She's been very quiet today. She had two therapies...speech and OT and did well with both. Tonight she was so snuggly and sweet, I laid down on the floor beside her and we just cuddled! I could just eat her up! Hoping for more of these wonderful days and sleep filled nights! Today is my sister's birthday! Just want to say a quick Happy Birthday to her!! (One of my favorite pics of her and Reagan from Christmases past!)

Sunday, August 16, 2015

Another good one

Reagan slept well last night and had another good day today. She's been super smiley and sweet. A little more tense in her body (crunchy) with her hands getting tangled up in her hair A LOT! It's definitely time for a hair cut! Actually the only time she made a peep all day was when her hands were so tangled up in her hair, she couldn't get them out! Her temperature regulation seems to be a bit off tonight. Her hands and feet are ice cold and she sweat her back wet! But she's been great. Another great one for my girl. What a blessing to have such a great weekend after that week we had last week! And we are loving the smiles!! Such a darling girl!

Saturday, August 15, 2015

No more Saturday nurse

Mike was gone fishing last night and this morning, so I was really thankful that Reagan slept like a rock last night! She woke up around 7am, I got up and moved her to her therapy room and then went back to retrieve my phone. There I found several text messages waiting for me from the nursing agency (never a good thing). Our Saturday nurse, the one who didn't work last Saturday and went home early the Saturday before, called in sick. ONE HOUR BEFORE her shift! Ugh. That's it for her. I was never a huge fan (just too young and undependable) but I was livid after today! Thankfully both kiddos were very good and our Thursday night nurse agreed to pick up come in at 1pm. I know we have had some nursing issues (and staffing is even worse), but our regular nurses have been awesome!! So for that we have been very lucky. Today was another really good day for my girl. She was sweet and super smiley. Just as perfect as can be!! I'm almost glad that nurse didn't show. I would've hated to have this sweetness wasted on her!! Tonight I got in lots of snuggles...hoping she can get another good night's sleep!!

Friday, August 14, 2015

Rough night but GREAT day!

Last night was rough. Seriously. Reagan only slept til about 12:10am or so. I was up with her moaning and still pretty nauseous until 1am (there were lots of tears but they were all mine)! Mike got up around 1am and decided to try to lay in bed with her to see if she'd sleep. Not a lot of luck. She was in and out of sleep but just restless...couldn't stay asleep. I decided to try her in her chair again at 2am and I could finally try another dose of clonidine. I think it worked because we were all able to snooze for a bit. I got up at 5:30am to run and she was asleep. By the time I got back she was awake, but at least she slept some! Thankfully she was awake but stable. No more nausea other than some licky sort of mouth movements but those are pretty normal for her. SUPER sweet. Very smiley and just plain darling. SO THRILLED to see that. She's had a really good day today. Been a little groggy at times and taken some small cat naps, but for the most part she's been awake and happy all day. She only had one therapy, a make up session of PT, she was trying to fall asleep beforehand but she was awake and got some good stretching in. Still pretty tight but hopefully she'll continue to loosen up over the weekend. Temperature regulation issues have lessened although she's still getting a warm back (no more sweating through her shirt) and her hands/feet are still pretty cold at times. She started off the day still holding her pees but she did have one big one by herself this afternoon, so hopefully we're almost done with that too. Hoping for a really great weekend for my girl...she certainly deserves it after the rough week she's had. Please continue to keep her in your prayers!


Selfie with her nurse Megan! 



Thursday, August 13, 2015

Super sensitive (migraine?) and then crazy bad nausea

So Reagan spent the night again in her tomato chair...with her being so nauseous, we just couldn't even attempt to lay her in bed. I gave her clonidine and we moved her to her chair and she dozed off shortly thereafter. She and her brother were both awake at 7 when I got up. She was still SUPER sensitive and a little gaggy. I gave her another dose of Zofran. Her sensitivity today was clearly triggered by light (among other things) and very stereotypical of a migraine. I decided to try the Imitrex (migraine medication) we still had from last year when we tried it on her on a bad/nauseous day. I'm not sure if it actually helped or not. She did seem a little less sensitive (and the nausea went away for the most part) the rest of the day, but who knows. She's been pretty serious but calm all day. She had PT around noon and despite being calm, her body is still very tense. They did get her up in her stander for a bit and her nurse said the entire time she had a not too pleased expression on her face! Afterward she had OT and she was able to get in some good stretches for her neck and side (even though at times she was looking like she might fall asleep)! The rest of the day she just took it easy. She would whimper here and there, but overall she's had a pretty calm and quiet day. Looking super cute and somber. Love this girl. Hoping she can pull out of this slump she's been in and have a great weekend!
**Update**
So I was all ready to hit publish when Reagan's nurse told me she was seeing a resurgence of the nausea. I went and checked on her and she seemed OK. Then an hour or so later it hit again and this time it hit HARD! The nonstop gagging/retching, spit pooling up in her mouth and choking her kinda nausea that we haven't seen in MONTHS! Months and months. Ugh. We just gave her some clonidine at 10pm and she has finally dozed off. Praying she can stay asleep and wake up feeling much improved. I don't know what this is about but I DON'T LIKE IT! Not one bit. Praying this is just an isolated incidence and we don't see this again anytime soon. :(

Wednesday, August 12, 2015

Better but nauseous and sensitive

Reagan was actually dozing off on her own tonight but seemed to get a second wind. I waited until about 11:20pm and gave her clonidine. She did get a little more active for a bit, but then settled down and fell asleep. I'm not sure how well she slept (in her chair) but when I woke up at 5:30am to run, she was very still and appeared to be sleeping. She was awake and moving around by the time I got back...but at least know she got some sleep! She was definitely sweaty from being in her chair all night (I noticed her having some temperature regulation issues last night sweating her back wet). We gave her a quick bath first thing, hoping that might help her feel a little better. She was also doing a lot of mouth movements. Very "gaggy" but not actual throw ups and it would come on in waves. We noticed an increase in saliva (she'd almost choke on it at times) and also a sensitivity with her eyes (less to noise/more to movement). Poor girl. We gave Zofran around the clock but I'm not sure how much it was helping. She only had one real therapy PT (speech came but just had to work on her computer while she was asleep/tense), and even though she seemed annoyed with the stretching, she definitely relaxed more afterward. Unfortunately that didn't last long. She spent a lot of time in her tomato chair yesterday because we had to keep her upright. Tonight I was able to hold her on my lap some, with her sitting up straight and she got some gas out. She's holding her urine a bit again so that's just another thing that's off with her right now. No crying at all today. Some whimpers/moans and grimaces, but overall temperament-wise she's been pretty calm...just sensitive. Hoping she can sleep this nausea off tonight. Can't stand see her fighting that again.







I took Ryan to the Aquarium yesterday after speech because he had a good session (we actually ate his favorite lunch Greek food with Daddy first and then went). Everything was great until he went in this stupid playscape and then wouldn't come out! Kids were trampling over him because he wouldn't move...finally I had to reach up from underneath (get another kid to help me reach him because he was trying to get away from me) and pull him through an narrow opening on the side and then I took him home crying. :( Ugh.

Tuesday, August 11, 2015

Tears

Soooooo...we definitely spoke too soon when we were telling her doctors it had been almost two months since her last bad day! Today was the day. She woke up fussing around 4 and Mike tried laying down with her. Then around 5 I heard her whining and we decided to move her into her therapy room. I tried giving her pain meds...nothing helped. She wasn't going back to sleep and she wasn't calming down. This has continued all day. She's doing less of the nonstop SCREAMING crying and more of the moaning crying. Very sad heartbreaking crying. With tears. Definitely seems to be in pain. Her nurse has done a good job of holding her and getting her to settle down and fall asleep off and on, but she hasn't really slept any long stretches today. Unfortunately nothing seems to be working. Not oxycodone, not clonidine, not ibuprofen...nothing. Poor girl. I really don't like the idea that we're seeing a reappearance of bad days once again. Praying this is just an isolated incidence. Praying she can get over this quickly and not have to deal with these horrible days again. Praying she can get some much needed sleep tonight. Ugh. Just praying!

Monday, August 10, 2015

Tummy pains?

Reagan had a pretty good day most of the day today. She was a little vocal/moany this morning, but we think it was her tummy bothering her! She did have a ton of gas today and 3 liquidy poos, so I think that's a good assumption. Over all though she was good. She had speech this morning and then OT this afternoon. She was a little sensitive to talking and certain toys/noises, but everyone just took that into consideration and she was fine! It wasn't until tonight that she finally went over the edge and started crying. Not exactly sure what it was that set her off, but she eventually settled down but remained on edge the rest of the night. I did give her some pain reliever tonight so hopefully that'll help her sleep. Hoping she wakes up feeling better tomorrow. It's supposed to be a sleepy day soon, but it looks like we're headed in a different (much worse) direction. :(



We took Ryan to a splash pad today that's in an old quarry! Pretty neat! He loved the slide! It's wheelchair accessible so maybe we can take Reagan in the spring! I think it's too crazy hot right now!


Sunday, August 9, 2015

Another good one

Reagan woke me up around 2:30am last night. She was making noise and I could tell she had wiggled out of her covers, so I went in to check on her. She had a wet diaper so I changed her and tucked her back into bed. I think she went back to sleep because when I got up to run at 5:45am, I'm fairly certain she was sleeping. By the time I got back though, she was awake and vocal! She was super smiley and sweet though, so I picked her up and moved her into her therapy room. She's had another good day today. A little sensitive to certain noisy toys or not getting enough attention, but good. We did have a nurse today so Mike and I took advantage and ran out for a quick round of golf this afternoon. The course was in terrible shape (it's been very dry hear lately) but there were nice views of the lake and a ton of deer (and babies) to look at! Hoping for a good week for my girl (this has been a great weekend for her)!

Saturday, August 8, 2015

Great day

Reagan had a really great day today! She slept well, waking up around 7:30am, and she was all smiles! Her body was also very relaxed, but she was alert! Big giant eyes, hands easily controlled, super sweet...it would've been the perfect day for pictures! Well, except the heat and the fact that our photographer is booked up on weekends. Oh well...eventually we will get that family photoshoot done! Reagan was a doll though and we were all loving it (Grandma included)! No nurse today, but that was OK. We were able to have her all to ourselves! She was very cuddly and content. A little loosey goosey in the body, but her head control was still good. Her nose is also a little red again from rubbing at it, although she's pretty sneaky with it and we don't notice her doing it...just the red nose afterward. She did have a HUGE blowout that required quite the cleanup, but she must have felt better after that! We waited until 8pm to get her in the pool tonight (because it was so hot), but she really seemed to enjoy herself! No sun shining in her eyes. She was kicking around and moving herself in the pool more than she normally does. Brother was a maniac, but what is new. He was climbing to the top of the rock waterfall and then jumping off of it! We had to put a stop to that! Definitely an accident waiting to happen!  We were in for an hour or so and both kiddos were worn out...Reagan quickly dozed off in her chair. Hoping for another good night's sleep and wonderful day for my girl again tomorrow!

Friday, August 7, 2015

Calm but vocal

Reagan has had a good day today. She slept well last night and woke up around 7:30am. She was still pretty serious and wide eyed, but very calm. She had a huge wet diaper (maybe a little stinky?)...thankfully she's going on her own again. Her temperature regulation issues also resolved themselves yesterday. No more sweaty back and ice cold hands and feet. She's been super precious today. Only one therapy, speech, first thing this morning but she did really well with it. She's gotten progressively more vocal as the day has gone on. Lots of random high pitched squeals...but happy squeals. We've tried pretty hard for smiles and haven't gotten any true smiles...but she's "smizing" as Tyra Banks would say (smiling with her eyes)! Her body is still pretty relaxed, she's putting her hands in her mouth, but she's not really fighting to get them back when we put them under her weighted blanket or take them away from her. I'm hoping she's going to give us a nice relaxed weekend! Grandma's coming...so I know she'll be happy about that. No nurse tomorrow but our Thursday night nurse is picking up Sunday for us, so at least we have one day covered. I would love to get her in the pool again...maybe tomorrow morning before it gets brutally hot?!?! Our temperature gauge says it's 105 right now on our patio although that can't possibly be right. Right? Yuck!

Reagan modeling her Ainsley's Angels medal from our sunrise 5k two weekends ago!

Ryan at his favorite restaurant! The only meat this kid likes...lamb gyro meat! 

Thursday, August 6, 2015

Sleepy metabolic appt

Today was a sleepy day. Not a sleep the entire day, sleepy day, but a sleepy day nonetheless (today was day 5 since her last sleepy day, so we were kinda expecting it). Reagan slept well last night and then just kept sleeping this morning. She missed her make up session of PT, but that's OK, I guess she needs the sleep! She didn't wake up til 12:30pm when her nurse decided to go ahead and change her to get her ready for her afternoon Drs appointment. She woke up a little wide eyed and serious, but calm. She stayed awake and was very cool and calm the rest of the afternoon. We had a pretty uneventful appt with her genetic/metabolic Dr...he basically just went through all of the "systems" making sure everything had been checked up on this past year. He did want to order some labs, in addition to the Stanford EPI-743 labs we needed to do, so we decided to just run up to the lab on our way out to get that taken care of. Ryan was a real stinker during her appt but much better while Reagan got her blood drawn. Reagan was a pro and the phlebotomist got it in the first stick! Both kiddos were looking really sleepy on our way home (and our way there). Reagan woke up when Mike carried her out of the car but dozed right off as soon as her nurse put her in her bean bag chair. And then she just continued sleeping the rest of the night! We moved her to her bed after we got back from Bible study but she was OUT. So happy to see my girl sleeping peacefully in her bed. Sleep does not come easy for this one, so when she can relax enough to sleep (especially with her arms relaxed up over her head)...it makes me so happy! Love this girl!



Wednesday, August 5, 2015

Sensitive but sweet

Last night Reagan was having a hard time falling asleep. Without medication she was dozing off but the second Daddy would try to get up, she'd get super vocal again. Finally I gave her a dose of clonidine and we went to bed. She must have finally dozed off because we didn't hear another peep until around 4am (her favorite time to wake up lately). I saw her squirmed down to the bottom of her bed, so got up and recovered her and went back to sleep til 5:30am. When I got up to run, she was still vocalizing but calm. By the time I got back, she had already wiggled out of her covers again and was wide awake! I moved her to her chair where she immediately seemed a little more content. I put on her arm restraint (to keep her from cramming her left had down her throat) and that seemed to help settle her down even more. She did have one weird episode that had her nurse worried a little. She's been very sensitive (squinting a lot and just sensitive to noises/us talking). Her nurse coughed and Reagan startled and then squinted a lot while turning her head to the side...not breaking out of it. By the time I got upstairs she had stopped and made eye contact with me. We've seen her do this (for years) usually when she's in the process of falling asleep and associated with her stiffening her arms out, but we've seen it other times too. It was the first time the nurse saw her do it. It's definitely very "seizure-ish" but her EEG gets better each year we check it...so I'm choosing not to worry too much about it. I left her neuro's nurse a message. I would also like to tell him of all of the neurologic quirks we've been seeing lately (increased sensitivity, lots more crunchiness, and no sleep vs sleep all day days). So despite that weird episode and being up early again today, she's really had a pretty great day! She's been super sweet and smiley. Definitely less tone than previous days, although still a lot of movement/kicking and wanting her hands in her mouth. Her temperature regulation has normalized and she's peeing on her own again as well (probably another thing I should bring up to her neuro). She had speech, PT, and OT all today and did really well with them all! Tomorrow she has an appt with her metabolic specialist. I'm hoping maybe he'll have input on the changes we've seen lately. This afternoon/tonight she's looking very sleepy to me. Tomorrow would technically be 5 days since her last sleepy day, so I'm curious to see what she does. Not that I want her sleeping through her drs appt, but God knows she could use the sleep. Hoping for maybe a NORMAL awake day tomorrow? That would be nice! Thank you for keeping our princess in your prayers!



Ryan cracking me up tonight! 

Tuesday, August 4, 2015

GI follow up and weight gain

I'm having a hard time remembering sleep last night. I'm thinking Reagan didn't sleep much. She was very vocal and active in her bed kicking all of her covers off again. I think she woke me up around 4am and I went in and covered her back up again. She was in a pretty good mood today but still very crunchy and tense in her body. Hands in her mouth a lot. Temperature regulation WAY off. And holding her pees again (her nurse had to use the "water trick" to get her to go). We gave her a bath first thing because the pits were getting pretty stinky (another nice side effect of precocious puberty). She had school this morning and other than getting a little overly excited when her teacher was trying to talk to her nurse, she did very well. Then we headed to her GI appt at Dell with brother in tow! Boy do I miss having Grandpa around to help out with him (he's vacationing in Europe). Thankfully Ryan did way better during the appt today, I think because he was preoccupied by the sea creatures on the wall! We did have to put Reagan's noise canceling earphones on, but they really seemed to help. We found out today that she's gained some weight. She's gone from 48lbs when we first started this formula to 52lbs. So instead of losing weight, which we were afraid she might because it is a lower calorie formula (and we had to increase her rate), she has actually gained! Good news. Her dr wants to increase her rate again (from 70mls/hr to 80mls/hr)...I guess just to make sure she maintains the increase? We're a little confused by that one. We're thinking why increase it, if she's already gained weight? I don't know. We definitely don't want her to continue putting on weight! That's not good for her or us! We're not making any changes just yet and if we do, it will be super slow! As far as commenting on her cycles or the changes we've seen with the pedialyte...he didn't really have any input. We're all hoping maybe the metabolic dr will weigh in on that on Thursday. But all in all, a good appt. And a good girl. Even though her body is not necessarily cooperating, she's been a sweet smiley girl. Hoping she can settle down and finally get some sleep tonight!

Monday, August 3, 2015

Squirmy, sweaty girl

I think Reagan slept most of the night last night. She woke me up around 5am, crunched up in a ball with all of her covers kicked off. I tried to just recover her and leave her in bed, but she was super vocal and was not going to tolerate that! I changed her and we moved her into the therapy room to watch cartoons and we went back to bed! She's still very crunchy today...hands in her hair or mouth at all times. She had speech and OT and did pretty well with both...considering. Chewed on her chewy tube during speech and got in some sitting and pushing up during OT. Her temperature regulation is still way off! Sweating her shirt completely wet when in her tomato chair. We've also noticed along with the temperature dysregulation that she's having less pees. Only three today, all fairly big and on her own, but still a little concerning. Tonight she spent more time on the floor wiggling around (our attempt at keeping her from sweating like crazy). We'd pull her back up, she'd wiggle back down. Over and over! Her mood is good, but I sure wish we could get that body to just relax! Hoping she gets some sleep tonight!

Sunday, August 2, 2015

Crunchy and vocal

With all of that sleep yesterday, my girl decided that she was going to wake up at 4am today! She's been very vocal and a wee bit kooky today. Very crunchy and into her hair nonstop...her body is super tense. She's been good though. Very sweet and happy. Especially vocal when she's not getting nonstop attention. Tonight her temperature regulation has been off. She soaked through her shirt sitting in her tomato chair, so I had to transfer her to the floor where she could roll around. And roll around she did! Every minute or so we were having to pull her back up onto her pillow! She was super active. She also wasn't winding down at all. So eventually I gave her clonidine and that seemed to help almost immediately. Daddy took her upstairs and laid down with her where she fell asleep. Hoping she can sleep tonight and wake up a little less tense tomorrow!

Saturday, August 1, 2015

Sleepy again

Today was a sleepy day! They seem to be happening sooner lately...every 5 days. I'm not really sure what's going on with her cycle of good/bad days. Lately the true bad days are nonexistent (thank God). But what we've seen in their place is far less actual good days and a lot more tense/crunchy/not sleeping days. Not necessarily much of an improvement. Today she slept the whole day. We moved her around, changed her diapers and bedding, she stretched and would move around, but she never really woke up today. I can already tell she's beginning the crunchiness! She was all curled up in a ball in her bed tonight! Not a fan. I wish we could get her back to her laid back, calm self again...at least SOME days!! Hoping she gets the rest she needs and wakes up happy tomorrow!