Tuesday, June 30, 2015

Super sleepy...again!

Reagan did sleep last night and then just kept sleeping...and sleeping...and sleeping! Today was a super sleepy day. She only woke up a couple of times today and never more than a few minutes. Just long enough to get her diaper changed and get her repositioned. I love to see her sleeping so peacefully, but it does make me wonder...what's going on in her body that's making her do this once again? It seemed she went quite a while without having any of the sleep all day sort of days and then now she's back to having them at least once a week. Strange. We also noticed today that the stinky pees are back! So assuming that's still the case tomorrow, we may be running in to to the pedi's office to get her cathed and finally get those urine labs her geneticist wanted (as well as check for a UTI...although she has had no other symptoms). The only thing we can correlate with these stinky pees, they seem to have become more common since adding the extra pedialyte. Not sure if this is at all related, or if it's just by chance. Hopefully we'll get some answers from the urinalysis. Hoping for a more awake/good day for my girl tomorrow!

Monday, June 29, 2015

Long night and not so good day

Reagan was up nearly the entire night last night (and so was I). Nothing was helping settle her down. I definitely think her tummy was hurting her. It was such a looooooooong night! She'd settle down when I was in there with her, but otherwise she'd fuss and moan. Unfortunately, today hasn't been much better. This morning she was getting increasingly tense again so her nurse gave her oxycodone. That helped her to relax and sleep a little. She slept through all of her therapies today...missing speech, PT, and OT! She did wake up once crying. Not good (we started her back on pedialyte today). This afternoon she finally seemed to take a turn for the better and she was more awake and we actually saw some smiles. Getting some gas out and a leg rub from mommy seemed to do the trick (her legs were SO tense I rubbed some panaway essential oil on them). Tonight she seems very off neurologically. Super tense/stiff, dozing off but then startling back awake and stiffening out, sweating her back so wet I had to change her pjs, maybe a slight hint of bad day smell, and still super sensitive (almost cried a few times because of us talking). Hoping some how, some way she can get sleep tonight. I've  been running on fumes all day, I definitely can't handle another night like last night.

Sunday, June 28, 2015

More tense

Reagan didn't sleep very well last night. She was pretty restless, so I'm not sure how much sleep she actually got, but at least she was in her bed! Today she's been pretty similar to previous days. Still tense, kooky/vocal, but she's also some crazy laughs today. Not a lot going on today. Mike planted a transplanted peach tree and then played in a golf tournament. My mom and I hung out with the kiddos all day. Reagan was definitely a little more tense today and there were a few times that she almost got too excited. Her nose is also more red. We spent a lot of the day trying to keep her hands away from her face! Tonight our night nurse came and worked so that Mike and I could go out with my friend from college and her husband who were in from Houston. We had a nice dinner and stayed out til all hours of the night (11:15pm a new record)! Reagan was dozing off just before we got home but had popped back awake. She also seemed to be getting more and more agitated. I just gave her a dose of oxycodone, but so far it's not helping. Looking like a long night for me and my girl!

Saturday, June 27, 2015

Still vocal/kooky

This weekend did not get off to a good start! First thing this morning we get a call from Reagan's Saturday nurse to say that she's not coming in today because it's raining! That's right...raining! I mean sure, you'll be late because it's storming and your afraid to drive, but not coming in at all?!?! Ugh. Not happy. Thankfully Grandma was here and both kiddos were pretty well behaved. Reagan was still very vocal and kooky today. She's putting her hands in her mouth, not a ton, but obviously enough to rub her nose raw. This afternoon Reagan hung out with Grandma while we went to a pool party for our Bible study. I wanted to take her but I'm so glad I didn't...I was eaten alive by mosquitoes! She's so sensitive to mosquito bites, it would've been a major disaster! She had fun with Grandma and Ryan had a blast swimming in a crowded pool! Good times.  Reagan was fighting going to sleep tonight but she finally went down. Hoping she stays asleep but I'm not super confident.

Friday, June 26, 2015

Talkative girl

Reagan had a good day today. Slept well last night and woke up super sweet. She's been very vocal/talkative today. Less high pitched squeals and more just overall nonstop vocal. Definitely still wanting undivided attention! And no more stinky pees (so we're waiting on the urinalysis til next week). She had a busy morning, she had a joint session with speech and her teacher from school. Then she had PT. She wasn't wanting to work too much, but she had some good moments here and there. This afternoon and tonight she's been wide eyed and precious. Super sweet and in good spirits. When it was time for bed she was all yawns but just kept talking and talking fighting sleep. She eventually dozed off in her bed. Hoping she can sleep well and have a great weekend!

Thursday, June 25, 2015

She's awake and spunky!

Reagan finally woke up! She's been a spunky girl today! Well rested and ready to go! She only had one therapy, OT, but she did well with that. Sat up in her bumbo chair (childrite chair), spent some time in her stander, had a couple of poos on her own, you know, routine therapy session! She's been really funny today, making this high pitched squeal any time she wants attention! And when I say high pitched, I mean break glass sort squeal! She's a character! Lots of energy after all of that sleep. Pee still a little stinky...we're in talks with the pediatrician to see about getting it analyzed. Trying to get in touch with the metabolic dr to make sure we get everything he wanted on the order. So, if the pee is still stinky tomorrow, we'll take her in and get a urine sample. Praying my kooky girl can get some sleep tonight! 
Ryan and I took a quick 15min trip to the aquarium today. Here he is at the ray touch tank...his favorite!

Wednesday, June 24, 2015

Sweet dreams

Reagan slept all day today. Literally ALL DAY! She only opened her eyes maybe twice or so and both times only kept them open maybe 10min. This girl was TIRED! She's still having stinky pees, but on a good note, while sleeping she's no longer having the crazy temperature regulation issues. No more sweating her clothes wet. Hoping she can sleep off whatever it is that's "off" in her body right now. Sweet dreams my princess!

Tuesday, June 23, 2015

Still super sweaty

It's been a pretty good day for my girl. She's still got a few things off, the most striking of which is her temperature dysregulation. She's very cool and clammy, yet sweating her back soaking wet over and over again. We kept her on the floor most of the day in an effort to keep her cooler. When she's like this, she gets particularly sweaty sitting in her tomato chair. She's been super crunchy and tense in her body. Less hands in the mouth (thank God) but still into her hair! Very difficult to hold. Despite everything that's off with her, she's been very sweet and smiley. Hoping she can get some sleep tonight and wake up more her self tomorrow.

Monday, June 22, 2015

Sweaty and sensitive

Reagan slept well last night and woke up with a fuss this morning and I thought we were in trouble. Thankfully she was fine and she's actually been very calm and quiet. Major temp issues. Sweating shirts wet!!! She had two therapies today and did fine with both. She's been very into her hands and crunching up and shoving her hands down her throat all day today. Definitely a challenge! We've changed out a lot of shirts today. Tonight she was acting strangely sensitive. She was keeping her eyes half open, but not really in a sleepy way, more in a sensitive sort of way. Not really sure what that's about. Hopefully she'll be back to normal tomorrow.

Sunday, June 21, 2015

Good but temp is off

Reagan had a good day today. It was a gloomy sort of day, so we didn't do much more than lay around the house, but it was good. Watched lots of golf. Ryan begged to go swimming all day, but it kept raining off and on. Poor guy. He LOVES to be in the pool. Reagan was very calm and content today. Chewing on her hands a lot and a bit spitty, but good. Her temperature regulation is off and she's getting sweaty easily so we've had her on the floor off and on today...giving her back some air so it can breathe. Hoping for a good week for my girl.

A few sweet pics of Daddy and his girl on Father's Day!

And boy!

And a few pics of my dad!

Saturday, June 20, 2015

Getting better

Reagan was a little moany last night. She'd moan, I'd jump up and run in her room, and she'd be still and quiet. This happened over and over again until finally around 6:30 I told Mike it was his turn. He went in and was about to lay down with her when he realized she was soaked! Hmmm, poor girl, I wonder how long she had been trying to tell us that! I changed her and stripped her bed (another stinky pee) and put her in her chair then went for my run. When I got back she was still wide awake. She's definitely been more calm than yesterday, although still very sensitive to us talking. Her eyes look a little more sleepy today, but she hasn't napped at all. She's been very into her hand and very warm (her back is sweating wet very easily). Her body is crazy tense and she's very crunchy, but her overall demeanor is better (if that makes sense). We've been giving her pedialyte since yesterday so hopefully she's on an upswing now.
Hanging out...watching cartoons together! 

Friday, June 19, 2015

So sensitive

I'm Reagan woke up again this morning requiring a diaper/bed change! That stinky pee is the worst! Boy do I want to get that analyzed. Today she's been very similar to yesterday, sleepy and calm but way more sensitive! She started crying a few times today...once when I opened the garage door (she's never been a fan of that noise) and a couple of times in response to us talking. Giving us the big lip and all! Poor girl. Each time she recovered fairly quickly. She's still been super precious though with big huge eyes. And so still and calm, you know, except for the crying. She's taken a couple of naps today, but I'm hoping she sleeps well tonight and wakes up tomorrow on the not so sensitive side of the bed!
Sleepy girl!

She may have a bit of a sock problem...

And a clothes problem as well...

Thursday, June 18, 2015

Sleepy, serious, and super calm

Reagan slept well last night and even slept in a bit this morning. She woke up serious, but calm. She wasn't super happy to see me...she kept turning away from me when I would talk to her! I think she was mad at me! She was pretty sleepy today. She dozed off and slept just long enough to miss OT, her only therapy scheduled for the day. There were definitely some red flags today...the seriousness, stinky pee, ridiculously still...we started the pedialyte back up this morning and have been giving it to her all day today. Hopefully it will thwart any funny business. Tonight she was in and out of sleep, she's in bed now. Hopefully she gets a good night's sleep and wakes up feeling better tomorrow. Both kids in bed by 10pm. That never happens!

Soooo sleepy! 

Wednesday, June 17, 2015

Busy good day

Last night was a bit of a disaster. The clonidine backfired and Reagan went from being kooky to being completely crazy! Eventually we had to move her back into her chair and give her a dose of oxycodone. With me holding her arms down, she eventually dozed off to sleep. Thankfully she did sleep the whole night...just unfortunately in her chair! Oh well. She did wake up happy today and she's had a really great day! This morning she had speech therapy and she spent part of that time tasting food! It's been a loooooong time since we've given her anything by mouth, but with all of her hand chewing, we think it's something that she really misses. She did really well with it and definitely seemed to enjoy it today. After a short break, she had PT and even spent some time in her stander! Then another slightly longer break before we headed to the aquarium. Ryan has gotten to where he just tears through there, running from one thing to the next...it's quite the workout keeping up with him. And there are lots of touch tanks, so I really have to be right on top of him, keeping him from injuring any of the animals! It was way more crowded today than we like, but still nice for a quick outing. Ryan was due for a nap the second we got home and Reagan just hung out with me downstairs and helped me cook dinner. She's been pretty laid back today, but definitely gets more vocal/slightly agitated when we're not talking directly to her (when we're talking amongst ourselves). Tonight I got lots of snuggling in and she seemed more tired and ready for bed when Mike took her upstairs. Hopefully she sleeps soundly in her bed tonight.

Tuesday, June 16, 2015

Spunky girl!

Reagan did not sleep well last night. She was in her bed and asleep when I hooked her up to her pump last night, but I could tell she was still very restless. Her eyes were closed but she kept rolling around. She woke me up around 3am with the high pitched squeals! I checked on her, she was fine, tucked her back in and told her to go back to sleep. She didn't listen. She was very vocal, so again I got up at 3:30am to check on her. Not looking like she's going to go back to sleep. Laid back down but finally around 4:30am it was clear, she was NOT going back to sleep and she was super vocal! I got up changed her and moved her to her chair in the therapy room, put on some cartoons, and gave her a dose of clonidine (hoping maybe, just maybe, it would help her fall back to sleep)! Nope. She stayed awake...and spunky! I'm definitely dragging today but she's raring to go! She had school this morning and was a superstar answering yes/no questions with her switches! Then this afternoon she had another great session with OT, a little gassy, but good to get that out! She's been a good girl today. Very vocal...especially when she wants to get our attention...but good. Now if we can just get her to sleep. She started up laughing tonight and acting kooky and is giving us trouble getting her down. Off to try some clonidine...

Monday, June 15, 2015

Great day

Reagan had a great day today! She's been super sweet, bright eyed, and smiley! Still a little more vocal/kooky this morning, but calmed down a lot as the day went on! She had both speech and OT today and both went very well. It definitely looks like we're in the clear and even her clamminess has disappeared. Her nurse was loving how great she was today and I got to enjoy lots of snuggles tonight. She's still a little gassy and her tummy looks slightly distended, but looks great otherwise. Oh she did have quite a lot of hiccups today, which can be a sign of reflux, so we will have to keep an eye on that. But super sweet and wonderful! Another good one for my girl!

Sunday, June 14, 2015

Kooky and vocal

Reagan slept well last night and woke up this morning spunky! She's been super vocal and kooky all day today. Still a bit tense in her body and also having a lot of gas (and even a couple bowel movements on her own), but overall pretty good. She's having lots of random super high pitched squeals, although sometimes we find they are not so random (sometimes she's definitely doing them for attention)! She's been wide eyed and full of energy all day today. Lots of kicking around and chewing on her hands. But sweet. And cute. And content. Hoping for a good week for my girl!

Saturday, June 13, 2015

Serious and sleepy

Reagan slept well last night and even slept in a bit this morning. She woke up more serious than she's been in days,, but calm. It was obvious she was more tense in her body. Last night I started giving her some extra pedialyte and we decided to continue that today as well. She definitely wasn't laid back enough to tolerate going downtown to watch her Daddy go "Over the Edge" for Make-A-Wish. Plus, the whole event was outside, so I knew she'd never tolerate the heat. Thankfully she made the decision easy for us and was fast asleep when it was time for us to leave. She's been a sleepy girl again today, sleepy most of the morning/afternoon. Tonight she finally woke up and although still very tense (and burpy), she's been relatively calm. Hoping she's still somehow able to sleep tonight. And hoping the pedialyte does the trick and she pulls out of this downward trend!

Not sure how well this will work, but here's a short video. There are a couple of cuss words as he first goes over the edge! He said the only time he was worried was when he first stepped down!

Friday, June 12, 2015

Sleepy sweet girl

It's been a good, but sleepy one for my girl. She woke up a little after 8 to the beeping of her pump, but she woke up all smiles again! She was so sweet and super chill, she started dozing off  during her speech session! She was in and out of  sleep all morning/afternoon. So peaceful though, even smiling in her sleep! Her temperature regulation still seems a bit off. She's a little overly sweaty today. We were wanting to take her for a walk, but between her dozing off and being so sensitive temperature-wise, we just didn't think we'd make it far with her. Tonight she was awake, but we couldn't let her sit in her tomato chair...she was getting way too sweaty (and there was a definite "bad day smell")! So I put down a blanket on the floor in the living room and let her roll around all night! She seemed to enjoy it and it kept her from getting too sweaty (although even when she wasn't sweaty, she was clammy). She eventually fell asleep and was OUT. Sweet dreams my princess!

Thursday, June 11, 2015


Reagan slept well again last night but woke up a little early around 6:30am this morning. She was super sweet again, so we were pretty happy about that. No therapies at all today (almost everyone is gone on vacation this week). We decided to take my girl outside to swing for a bit this morning. It was so cute...Ryan was helping to push her in the swing! Ryan was eaten alive by mosquitoes in the first few minutes he was outside (before I could get spray on him)...hopefully the spray worked for Reagan since she is SO sensitive to mosquito bites! We did have to eventually come in because it was getting hot and my girl is not regulating her temperature so well right now. We've noticed super sweaty back and ice cold feet all day today. She's also been slightly sensitive to us talking (she gets very vocal), but as I've said before, I think it's more to get the attention redirected to her! But of course, she deserves all of the attention. Those were really the only slightly off  things about her today. Otherwise, she's been perfect! Super darling. LOVING these good days!

Wednesday, June 10, 2015

Bathing beauty

Reagan slept well and woke up super sweet and wonderful today! She had speech therapy this morning, unfortunately I hogged a lot of that session talking to her therapist about Ryan and how I want us to start using Reagan's eye gaze computer more for choices in her daily activities. Afterward, we got my girl suited up and in the pool for the first time this year! She did great. It was a little sunny (and she had been a little visually sensitive), so we were constantly trying to shade her eyes, but I think she enjoyed it nonetheless! And she looked like such a little fashionista! She was such a sweetie today. Loving these good days for her...hoping she can hold out and have a great weekend!

Tuesday, June 9, 2015

Less tense, more awake!

Reagan slept well last night, although she was rolling around a bit. I found her this morning rolled up in a ball up against the side of her bed. She slept in a little this morning and woke up sweet and smiley, but still a bit tense in her body. Not a lot going on this week, lots of her therapists are out of town, so the only therapy she had was OT this afternoon. She did a lot better today, although still tense, she was way less crunchy and not fighting for her hands nearly as much. She even spent some time in her stander! This afternoon she was a little more into her hands (sticking her fingers down her throat) and she was smacking her lips a lot, which made us worry that she might be nauseous. We gave her some Zofran and she seems better ever since. She's been a good girl tonight. She "talked" with Grandma on Facetime for a bit. She hasn't been that vocal today but really seemed to have something she wanted to say to Grandma! Such a cutie. Hoping to finally get her into the pool this week. The weather has finally managed to heat our pool to a comfortable temperature for her (Ryan has been in it 3 out of the last 4 days), so we need to get this girl in the water ASAP! Lord knows she's got enough swimsuits to wear a new one every day! She seemed better the rest of the night and I snuggled with her for a couple of hours before bed. Unfortunately, she wasn't falling all the way asleep, so Daddy had to lay down with her for a while. Not sure if he just fell asleep or if she's just fighting sleep, but he's still up there! It's after midnight, so I'm going to bed!

Monday, June 8, 2015

Crunchy and sleepy

Reagan has been pretty tense and sleepy again today (lots of sleepy days...not sure what's going on). This morning she woke up around 7:30am, but dozed back off just before speech. She slept for a bit and then woke back up for a while before dozing back off again. This afternoon she woke just in time for OT, but was super crunchy and fighting her therapist for her hands the whole time. They used her restraints during therapy and then again later, to try to keep her hands out of her mouth. She's chewing on those fingers a little more than we'd like. Tonight I held her for a couple hours and was able to keep her hands out of her mouth. She was very cuddly and eventually dozed off in my arms. Hoping for a more relaxed and less sleepy day for my girl tomorrow!

Sunday, June 7, 2015

More sensitive and sleepy

Reagan slept well last night and woke up this morning around 7:30am. She was still smiling when I picked her up, but she was definitely more tense in her body. Daddy came in to see her and immediately he got the fat lip! Even more sensitive today. I gave her a bath and left her laying on her mat (so Mike could go up and bring her downstairs), by the time he got up there, she was fast asleep. She slept for a few hours while Ryan and Mike went swimming. Then when Mike was tired of swimming, our neighbors came over and swam with Ryan. He had a blast and was definitely pooped and ready for a nap. Reagan eventually woke up but she was still very sensitive (especially to Mike). Despite just having a bath, she was sweaty and had definite body odor. I decided to go ahead and add the pedialyte flushes. I'm not sure where she's headed with this, but if we can circumvent it before it progresses too far, it's definitely worth a shot. She dozed back off in her chair but when Mike tried to transfer to her bed, she immediately woke back up. I moved her to her tomato chair upstairs where she did eventually doze back off. Thankfully, a couple hours later when I transferred her back to her bed, she stayed asleep. Hoping she can sleep tonight and wake up less sensitive tomorrow.

Saturday, June 6, 2015

A bit sensitive

Reagan had another good night's sleep last night and woke up with giggles! She's been super sweet and smiley all day today. I took a class this morning on ABA techniques, something I think will be very helpful in altering some of Ryan's difficult behaviors. Reagan was a doll for the nurse. Mike and Ryan took a little road trip to the lake/park. This afternoon Ryan, Mike, and Mike's sister's daughter Raine all went swimming. Then tonight Mike's other sister and family dropped in on their way back to Houston. Reagan was a bit sensitive tonight. Not a fan of us talking so we had to be careful to not upset her. She dozed off on her own, so hopefully she'll get another good night's sleep tonight.

Friday, June 5, 2015

Busy day, precious girl

Reagan has had another great day today! Still super giggly and goofy. Slightly more sensitive today. We noticed a few times when we were talking, she'd interrupt us with a loud vocalization. I think she does this just to get our undivided attention. It works. It's been a busy morning. Reagan had speech therapy and as soon as she was finished, we jumped in the car and went to the aquarium! We had a great time. Both kiddos really seem to love it. Afterward we came home, unloaded Reagan and nurse and then changed into swimsuits and headed to our neighborhood pool. There we met up with a little boy from Ryan's class. They didn't interact much, the pool was bustling with kids (it was the last day of school), but his mom and I got to talk a little. We're hoping to get a few of the kiddos together (the ones that live in our neighborhood anyway) throughout the summer since they will all still be in the same class next year! Ryan had a blast. He was out in the middle of all of the older kids just floating along. It was chaos though. We were all exhausted this afternoon and just took it easy. Tonight Reagan and I snuggled a lot. Oh my, this girl is SO precious! Huge eyes, nonstop smiles...beyond adorable! Tonight she needed the clonidine again to fall asleep, but she's asleep in her bed now, so hopefully she'll have another good night!