Monday, October 31, 2016

Happy Halloween!!!!

Reagan slept well last night, waking up smiling right around 8:30am this morning. She had speech this morning and did well. She's been crunchy today, lots of movement, shoving those hands in her mouth a lot! It did make it quite difficult to paint her nails yellow for Halloween but with the help of the arm restraints, we got it done! We put some batman decals on her thumbs in hopes they wouldn't end up eaten (one of them eventually disappeared so who knows what happened to it). This afternoon she had school/vision and did a great job with that as well. She was still having some issues holding her pees when the nurse left and she ended up peeing all over her batgirl costume just as I went to go get some warm water to help her go! I changed her, dried everything up as well as I could, put on her tights (that thankfully weren't on yet) and then I lined her wheelchair in black shirts to absorb anything that was still damp! We got a couple quick batman family pics before I headed out with the kids for trick or treating. Reagan did great and although a bit vocal at times, didn't seem to mind the mass crowds passing us through our neighborhood! Ryan did exceptionally well tolerating his costume (even wore the mask the entire time without a single attempt to take it off) and then went up to each door on his own to collect his candy! We made our way around the entire block and both kids had a blast! By the time we got back, both of them were sweating and ready to get out of their costumes! Dad was on candy duty for at least 2 hours! He loved that (not). Ryan did go back out and hand out some candy which he seemed to enjoy! After I fed and changed everyone we loaded up in the car and drove around the neighborhood to look at lights. A lot of houses had already turned them off by 9pm! :/ We all came home exhausted and ready for bed! Hoping for another good night's sleep tonight. Thankful my girl is finally sleeping again!



Sunday, October 30, 2016

Knock on wood

Reagan slept well last night, even sleeping in a little, not waking up til 9:30am this morning. She woke up in a good mood. Smiley but active. Very kicky! She enjoyed rolling around on the floor and eventually dozed off! She took a nice two hour nap and then woke up smiling and vocal! We helped her poo and gave her a bath and then she promptly dozed off on the floor. It was short lived and she was back awake less than 30min later! She's been sweet and vocal tonight. It's looking like it might be a good Halloween tomorrow! It's been a long time since she's had a good day on Halloween, so I'm knocking on a lot of wood right now!

Saturday, October 29, 2016

Calm, quiet, and tense?

Reagan slept well last night! We weren't sure how she was going to wake up this morning since yesterday was not the best day, but we were still really hoping she'd be able to make it to the race this morning! I left around 6:45am and she was still asleep. She woke up around 8:30am when Mike went in to change her. She was tense but calm so he loaded her up and took her to the race (and my step mother went along to help with Ryan)! I got a text around mile 8 that they were headed my way. I met up with them around mile 12 and then we ran the rest of the way in with my girl! So glad we were able to pull that off! Sweet Ryan even tried to run along with us for a while at first, but Mike took him back to the truck sure he wouldn't be able to make it all the way to the finish. Reagan did awesome! Even with the noise at the finish, she was very calm and quiet. We got back home around 11am and I finished up her morning medicines (a little late) and then she dozed off laying on the mat. She slept for a while, waking up here and there, but then dozing back off again. No pees from about 2pm on. Definitely holding her pees again. For being so calm and seemingly relaxed, her body is still holding a lot of tension. She was awake for a bit and then dozed back off. She was asleep when we left to go to a Halloween party and left both kiddos in Grandpa's care. When we got home at 10, Ryan was asleep in bed, Grandpa was almost asleep, and Reagan was still but awake...and still NO pee! I helped her go at 10:30pm and she finally went! This girl! Hoping she will sleep tonight and wake up tomorrow a little more relaxed in her body!



Friday, October 28, 2016

Stressed

Reagan had some difficulty falling asleep last night and then was up and down all night crying. Ugh. Not good. This morning she was more whiny/tense than crying. Overall she seemed very tired (obviously, she was up most of the night). And she kept having nervous bursts of laughter here and there. Her nurse just tried to keep everything calm and quiet...it was a good day for no therapies. Eventually she did escalate a bit this afternoon requiring some pain medication. She dozed for a little while but then woke back up still completely dry. She's definitely holding her pees again. Her nursed helped her go and then we gave her a bath. Tonight she was still stressed, vocal, and holding. I have no idea what to expect for tomorrow. I'd love for her to make it to the race, but it's not looking good! We'll just have to see how she sleeps tonight and feels in the morning!

Thursday, October 27, 2016

Goodbye Megan

Reagan woke up last night around 3am and was vocalizing, but content. I saw that she was still covered up, so I left her and she eventually fell back to sleep. She slept in until around 8am or so and woke up a little wide eyed and serious. Another soaked bed, so she needed a complete outfit change before we could even move her! She did have one weird "episode" this morning where Megan was looking at her and she started blinking a lot, long blinks, and then turned her head to the left and stayed fixed for about 30sec or so. She came out of it with a little laugh and then was fine. Ugh. Damn hormones. Not a fan. Other than that, Reagan had a pretty good day. No therapies until this afternoon when she had OT. They carved a pumpkin! So fun!! She definitely seemed to enjoy putting her hands in the pumpkin goo and even tried to put her hands in her mouth afterward for a little taste! ;) After OT we decided to take a nice little stroll through the neighborhood to get in a couple more miles before the race on Saturday. It was a nice day for a walk. We pushed both kiddos and they both were great! Today we said goodbye to nurse Megan. Very sad. She will be missed.






Wednesday, October 26, 2016

Sweet girl

Reagan woke up this morning super sweet and darling. I noticed she was a little sensitive in her eyes at first (lots of blinking) but that seemed to fade away as the day went on. Reagan only had one therapy today, speech this morning, and she did great with that. They did some feeding (Reagan's loves to eat) and then worked on her eyegaze. Not much else going on. Today is Megan's second to last day (tomorrow is her last) and it's hard to think about it without getting teary eyed. She and Reagan had a movie marathon today...our dvr is dead so her tv has been unwatchable except for movies. They also took a bunch of pics and played with snapchat! Megan bought them both engraved best friends necklaces! Reagan's name is engraved on the back of Megan's half heart and Megan's is on the back of Reagan's! So sweet! Reagan has had a TON of stinky gas today, so before bath time I helped her go and then she had a nice relaxing bath! She's been pretty laughy this afternoon/tonight. I picked her up and held her tonight and I must've had her in just the right poo poo position (bottom low, knees high) and she went again on her own! Sweet girl! That's a lot of poo over the last two days! The rest of the night she was laughy/vocal but sweet. Yawning a lot but not falling asleep on her own. Eventually I did have to give her some clonidine to get her to bed.




Tuesday, October 25, 2016

Busy good day + lots of poos!

Reagan had a good but poopy day today! She started the day off with a big one!  I've noticed a little sensitivity to me...but maybe it's just me talking to her nurse that's annoying her? She had PT again this morning and worked on high kneeling and standing (and another poo). We decided to take a walk right around 12:30 to try to get in some extra miles toward her kids marathon putting her right at 20miles!  Only 5 left to go! She seemed a little sensitive/vocal right as we headed out, but settled down and seemed to enjoy the walk.We had to walk quickly though since we had to be back for OT by 1:30pm. Reagan's OT is finally back from her 2.5week vacation and boy have we missed her. She really worked Reagan and helped clear a lot of gas out! So three poos total today! It's been a while since we've had one of those days...but good to get everything cleaned out! Thankfully she's been in good spirits! This afternoon she even spent a good long chunk of time in her stander! Initially she seemed to get a little fussy after about 10min or so of standing, so we lowered her and let her sit for a while (and while she was down I took off her left AFO because her foot appeared to have shifted a little and I put it back on). Then we stood her back up where she stood for a good long time...maybe close to 30min playing with her switch toys and then spent another chunk of time sitting afterward. So she had her AFOs on for a very long time and got in some good standing time as well! Overall it's been a very busy, very productive day!


Lots of hand in the mouth today but also using her hands to press her switch! 

Monday, October 24, 2016

Good day

Reagan had a good day today. Still a little groggy from all of her sleep yesterday. She slept well last night and woke up this morning around She had speech at 10am and had a great session. Was really good about looking/paying attention to the PODD sheets. Then this afternoon she had a make up visit of PT scheduled and we took her bike out for a spin! We were quite the caravan going down the sidewalk! She seemed to enjoy it and Ryan had fun riding with his sister (and looking at Halloween decorations)! Then this afternoon we were hoping to squeeze in a quick bath before school, when Ryan and I made a quick run to the grocery store and I locked my keys in my car. Ugh. I had to have a friend bring me a spare. Needless to say, the bath didn't happen before school, but she did have a good session with her teacher. After school, her nurse was kind enough to stay late and help me give her a much needed bath! Clean and happy!







Sunday, October 23, 2016

Sooooooo sleepy

Reagan had a sleepy day today. She slept the majority of the day away...not even waking up/moving out of her bed until late this afternoon! She finally woke up maybe an hour or so before her nurse left and then was awake/kooky for a few hours before falling back to sleep again. Sweet girl. She must really need her sleep and it seems Sunday is her day for it!

Saturday, October 22, 2016

Sweet girl, tense body

Reagan was awake this morning when I got up...so no idea how long she had been laying there quietly awake. She did finally have a pee on her own (thank God). She's been calm and serious today...but still quite beautiful. She was perfect for the baby shower, nothing bothered her she was so laid back. It was funny, everyone already knew who she was since Megan talks about her so much! We had a nice time and Reagan couldn't have been any better! We came home and have had a pretty laid back rest of the day. She's a little spitty/foamy, she keeps biting on her lower lip and ends up with crusty foam around her mouth. She's been pretty still. Kicking around a little, but not really putting her hands in mouth. She's bringing them together at midline a lot today. So precious to see her with her hands just clasped together in her lap! Definitely still a little neurologically off. I think it might be puberty to blame for that. Who knows. Peeing is still off. I had to help her pee twice this morning/early afternoon, then she went once on her own tonight. Hoping she'll have another before bed. Even though she appears calm, her body is still very tense (hence the holding). I'm hearing some teeth grinding as we speak. Hoping she can get back into a more normal groove tomorrow!





Friday, October 21, 2016

Calm and sweet but getting tense

When I woke up at 5am to run I saw Reagan moving around in her bed. She was quiet so I thought maybe she'd doze back off, but when I got back from my run, she was still awake. I moved her to her chair, she was still dry...still holding those pees! She has been super precious today. Very quiet and smiley. Still super crunchy...when you lay her on the floor she curls up into a ball! Less into her hands but still putting them in her mouth here and there. She had a nice laid back day today. No therapies today so she just spent a lot of quality time with her nurse Megan. Next week is her last week. She'll be a month out from her due date and it's time...but we don't want her to go! We're all very sad about it. She's been a big part of our life for the last 3yrs, she's practically family now, and as I type this I'm crying. She will be missed. Even Reagan's therapists are sad about it! Tomorrow she's having a baby shower and I'm really hoping Reagan will be up to going. She's had such a great day today...so calm and so laid back and smiley...just hoping she can keep calm through tomorrow! Tonight she's been a little more serious. Very tense in her body, no smiles, some teeth grinding, and holding her pees. I tried and tried and couldn't get her to go before bedtime. She's also very twitchy. Definitely seems to be very out of it and neurologically off. Reminds me a little of how she was a few Sundays ago. Hoping she snaps out of this and manages to have a good day tomorrow!

Thursday, October 20, 2016

Precious and calm

I woke up this morning to Reagan vocalizing (Mike said she had been vocalizing for hours)! I found her laying on top of her covers, sockless and cold. I changed her and moved her to her therapy room. She was more calm/less vocal once in her tomato chair. You could tell right away she was definitely more calm today. Big eyes, that were a little sensitive this morning. The rest of the day she was practically nonvocal. Very smiley and still putting those hands in her mouth, but the kookiness is gone. She's been super precious. Still very crunchy and tense in her body...she's been holding her pees all day today. Her temperature regulation has been off (sweating her back wet when in her chair), so her nurse has kept her on the floor a lot today. She's been rolling over onto her tummy over and over again! Her tube has been a bit leaky, but hopefully that's just because of all of the rolling. This morning she had PT and did well with that and then this afternoon she had school/vision therapy and did well with those too. All around a pretty good day. I'm happy to see her more calm...now if we could just get those hands out of the mouth!

Wednesday, October 19, 2016

So active!

Today has been pretty similar to the two days before. I think she's getting some sleep, but we keep finding her awake in the morning, so we're not sure how much. My girl continues to be super kooky/vocal. Maybe a little less tense, but still kooky. She had speech this morning and they worked a little on using PODD (we don't have a full book yet but this was part of the book her teacher printed out). She also used her eyegaze and her yes/no buttons! I think her speech therapist might need a few more arms! Reagan did well with everything. After speech she spent some time playing with her switch toys. It was funny because I was downstairs and I could hear her hitting her switch over and over again unprompted! She started looking sleepy and then around 1pm dozed off. She slept for an hour or so and woke up vocal! She definitely seems to be having some tummy discomfort. We helped her poo and then gave her a bath and I think that must've helped her feel better! Tonight we had her on the floor and she was SUCH a rolly polly. She was rolling onto her tummy, squirming down off her mat, turning herself around 180 degrees! She's been so active! Not sure how that translates to sleep tonight. I did finally give her clonidine and she seems to be soundly asleep at the moment. Hopefully tonight's the night?

Tuesday, October 18, 2016

More of the same

Not sure how much Reagan slept last night. She was pretty vocal all night long (so none of us slept that well). Today she continues to be super vocal. At times squealing so loudly she seems like she might be getting upset. Very alert, very active (despite no sleep). Hands still in her mouth nonstop. She had PT this morning and they worked on sitting and used the arm restraints to help keep her use her arms instead of cramming them down her throat! Seriously! She'll put all 4 fingers from each hand in her mouth at the same time (only leaving out her thumbs)! This girl. Meanwhile her face is getting very red. Especially the left side of her mouth and her nose on the same side. That left hand is her favorite. This afternoon she started looking a little sleepy and dozed off, but only for an hour and a half or so. She woke up just in time for school. She actually tolerated school really well (even though she was still quite vocal). She's been a bit kooky but still very happy...so that's good. Really hoping she can settle down and get some rest tonight!
Brother, the ham! That is an attempt at a bat...turned butterfly! ;)

Monday, October 17, 2016

Sleepy and kooky!

Reagan slept well last night and had another sleepy sort of day today. She woke up this morning and was a bit vocal/kooky/crunchy. Lots of movement, lots of vocalizing! She had speech at 10am and she was fine for the first half and then passed out cold! Her nurse moved her out of her wheelchair onto the floor where she slept! And slept! She woke up 2 hrs later and again was very vocal and active...hands in hair or mouth at all times. Her nurse tried to distract her with some chewelry and a vibrating chew toy, but she was pretty persistent! She dozed back off on the floor again and slept for another 2hrs or so, waking up just before her nurse left. Tonight she was pretty excitable/kooky so we just tried to keep it calm. Hoping for sleep again tonight.

Sunday, October 16, 2016

Sleep and PODD

Not sure how much (if any) Reagan slept last night. She woke up this morning on edge but calm. Looking extremely sleepy. She seemed to prefer to be left alone, but she did tolerate mommy talking to her and her brother reading a story to her. She eventually dozed off and slept for a good long while...woke up just long enough to be changed and moved to the floor and promptly fell back to sleep. Her nurse, teacher, school speech therapist, and I all went to a PODD training this afternoon. It was very interesting to see this lady's journey with PODD with her son and we're excited to see how this might work for Reagan. We plan on starting with the low tech book option but there is also an app for the iPad (that's on sale right now 50% off for Rett syndrome and AAC awareness month) and a version for her eyegaze computer that we will eventually want to get! We got home to find Reagan asleep in exactly the same spot as we had left her! Daddy didn't have to do much while we were gone. She actually never really woke up. I went in and changed her into pjs and she opened her eyes for a second but then just curled right back up and was back out. Mike moved her to her bed and I'm pretty sure she's out for the rest of the night. Glad she's finally getting some sleep as she had gone so many days without it!

Mike texted me this pic at 2:44pm as I was headed to my training...

Then this one at 4:49pm...still out cold!!

Saturday, October 15, 2016

To Houston and back

Reagan didn't really seem to sleep much again last night. I found her this morning completely wiggled out of her covers laying at the top of her bed...sideways. She was serious, but calm. Very quiet. We got everyone dressed and loaded up into the car and left around 9:30am to head to Houston. Reagan was very subdued and zoned out for most of the trip. She had big, wide eyes...but we couldn't get a laugh out of her for anything! She was pretty calm most of the trip but got a little kicky at the end (kept kicking the back of my seat) when the sun was shining in her face. I tried to block it with a blanket, but that only helped a little. We finally got there and she was calm and cool. It was very noisy as there were a ton of cousins running around, but she didn't seem to mind. Ryan had a blast playing outside with the dogs and on the swing set (and breaking his cousin's toys). We stayed from about 12:30-6:45 and then headed back. Both kiddos were great for the drive home as well. Reagan was calm the whole way, but never once dozed off. Ryan dozed off for a bit (we thought he'd be exhausted) but he woke up when we stopped for a snack. Ryan went to bed shortly after getting home but Reagan stayed awake and was actually rolling around all over the floor. No rest for the weary. Eventually Mike took her up to bed and tried laying down with her but she never fell asleep. She's still quiet but just not going to sleep. I'm giving her clonidine and hoping for the best! We're all beyond exhausted (so is she but her body is just not letting her sleep)...

Sooooo serious but precious!

Ryan and Carter are only a yr apart in age! 

He was surrounded! A little chaotic outside!

What's that on your head Mike? Oh it's a dog! ;)

This dog loved Reagan! 

A little zoned out but not at all sleepy (despite getting no sleep for the last few nights...)

Friday, October 14, 2016

Silly girl

Reagan did not sleep last night. She was awake and laughing off and on the entire night. She's been laughy/kooky all day today. We took a nice long walk through the neighborhood this morning checking out everyone's Halloween decorations. The temp was still tolerable but it was getting a little sunny...when exactly is it going to be fall here in Texas?? When we got home Reagan had PT and did well with that. They had her in her AFOs again working on some weight bearing and her therapist mentioned again about how well they're fitting her!!! Woohoo! Finally! We've been avoiding her stander for the last month or so just because of her ill fitting AFOs, now that we've finally got that sorted out, it's time for her to get back in it! This afternoon she had school and did well with that too. She was a little kooky, but good. Tonight I took her out to see ours and our neighbor's Halloween decorations. Her favorite thing was the light that shines the moving spiders on the drive way!! Definitely interested in seeing how she is tomorrow. We're planning on a day trip to Houston for Mike's mom's bday, so we're really hoping she behaves! Sleep tonight would be a nice start...



Our neighbor's house...

Thursday, October 13, 2016

Calm but then kooky

Despite the craziness last night, Reagan did sleep well and waking up just before 8am. She's been very vocal/kooky today. A little more calm and smiley this morning, and then this afternoon she really turned up the kookiness! She had only on therapy today, PT, but she did get up into her stander in her new AFOs. Her therapist said they looked great even after 15min in the stander there was no redness. Hoping these are the perfect fit...no adjustments needed. We were hoping maybe today would be a good day for photos, but the smiles and calm body from this morning just didn't last. This afternoon she was a lot more tense, serious, on edge, and moving way more than this morning. Still not the right day for photos. Ugh. Some day we'll get these photos done...right? We've only been trying to do this for a year now!!!! Tonight she was fine, still a little serious and rolling all over the floor, but not as sensitive/on edge as she was this afternoon. Hoping for a more normal day tomorrow.

A preview of our "witch house"!! It's definitely beginning to look a lot like Halloween around here...