Saturday, October 22, 2016

Sweet girl, tense body

Reagan was awake this morning when I got 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 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 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 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!!