Sunday, July 16, 2017

Escalating (prayers needed)

So my girl really didn't sleep much (if any) again last night. She was VERY restless. Tossing and turning nonstop. She'd doze off for a few seconds, only to jolt herself back awake again. We heard her laughing kooky laughs off and on throughout the night, which is good that she was still happy, but bad that she was still not sleeping. This morning she was content for the most part. Still lots of kooky laughs, but still very restless. Better in her chair...lots of tossing and turning when on the floor. Swiping at her face/nose a lot. Her poor little nose is all red and scratched up! Her nurse was here until this afternoon, so it wasn't until I was around her for a while this afternoon that I realized she's very much on edge. Tossing and turning nonstop (chorea) and very trembly. She basically looks like she's having a bad day without the crying. Poor girl. We tried something to help calm her down, but if anything, it had the opposite effect. She was more restless. More irritable. More uncomfortable. Ugh. SO frustrating. We had a long conversation with her complex care dr a couple of weeks ago about this, but big surprise, we never heard back from him. Guess I know who I'll be calling first thing in the morning. It's just so upsetting to see her so uncomfortable and not being able to help. It's been a nice long run of good days...but not enough. It will never be enough. I don't want to ever see her in pain, and especially not every week! My sweet girl. Please pray for her. She is clearly at war right now with her body and nothing we can do seems to help. Praying it was pass quickly and she can finally get some much needed rest! Please keep her in your prayers!

This morning (sensitive hence the head phones) but still happy

This afternoon...miserable. 

Saturday, July 15, 2017

Getting tense

Reagan again didn't sleep much last night. She was pretty restless going down, she eventually settled down and seemed to be OUT, but then I heard her making noises off and on throughout the night. When I got up to run at 6am, she was squealing and laying completely on top of her covers! I tucked her back in and left, but when I got back she was still awake. Wide eyed...very much awake. I'm guessing not much sleep went on last night. Thankfully, she was STILL in good spirits. She's been getting more and more tense over the last few days, I really thought we were in for a bad one today. Don't get me wrong, she's still SUPER tense. Grinding her teeth. Very vocal and kooky. Cramming her hands down her throat nonstop and gagging herself. She's a piece of work. But she's been fairly content, so I'm happy for that. This afternoon she's definitely escalated. She's been very tense. Much more serious (with occasional bursts of kooky laughing). Lots of clenching her jaw and grinding her teeth. Lots of spit and trying NONSTOP to get her hand. She's basically Houdini. She can get out of her arm restraint almost as fast as I can put it on! Very challenging. Her hands are red today (and yesterday) seems like some sort of temperature regulation issue. I have no clue what to think about tomorrow. I'm just really hoping she can sleep tonight. So far she's going on two nights of not much sleep at all. I'm tired for her!

Ryan likes to sit just close enough to get kicked! Reagan is happy to oblige.

A little (a lot of) rain won't keep them out of the pool!

Friday, July 14, 2017

Less sensitive, more smiley

Reagan did not sleep well last night. She was very restless and not wanting to go to sleep. I'm actually not sure how much (if any) she slept last night. She was a bit kooky. Thankfully when we finally took her out of bed this morning, she seemed in pretty good spirits. Honestly we didn't know what to expect. If anything, she's actually had a better day today than yesterday. She hasn't been as sensitive and she's even been pretty smiley. She's really been going at that hand though. Her nurse kept her arm restraint on as much as possible today because she was chewing it nonstop. Tonight she was still wanting that hand, but she was also super spitty and kept choking on it and her hand. Really hoping she'll wind down and doze off tonight otherwise she might have some trouble managing that spit laying down.

Thursday, July 13, 2017

Very sensitive

Much to my relief, my girl woke up happy again this morning. Super sweet and darling. Still not really smiling, but content. Lots of hands in the mouth (and spit on the face) again. She had PT and OT today and did pretty well with them. She was very sensitive today, especially to noises and the television. Tonight she was so sensitive that we kept her upstairs and I hung out with her (rather than bringing her down with her noisy brother and tv). She was fine upstairs. She did have one seizure-like episode though, when I was hugging her. I noticed her head was turned way to the left and then pulled back and looked at her and saw her eyes were fluttery and fixed. A seizure triggered by my hug? Ugh. Poor girl. She was fine the rest of the night though. Hoping we can stay away from seizures and bad days...


Brother's modeling pics debuted today with the release of a new collection! :)




Wednesday, July 12, 2017

A wee bit sensitive

Reagan woke up this morning in a good enough mood. She's still pretty adorable and cute, but just a wee bit sensitive, especially this morning. She had speech and wasn't thrilled to even get in her wheelchair. She ended up doing OK, not her best session, but not too bad. The rest of the morning she was just a little sensitive to talking and music. She was a little flinchy in her eyes as well. Just over all more serious. Sweet but not smiley. This afternoon, she was a little more laid back, but still tense. She's been sensitive to the television tonight, but pretty darling. She did have one instance where she teared up and almost burst into tears, but I saw it coming and distracted her and she stopped. Whew! I have a feeling we're just headed in the wrong direction again. It's been a really nice streak of 4 almost perfect days, so I guess we can't complain too much. Hopefully she can drag it out a bit longer!

Tuesday, July 11, 2017

Still good...let's go see fish!

Reagan had another good day today. She had both PT and OT and did well with both. Although she's been a little more loosey goosey today, so that's counterproductive for certain things they work on during therapy. After therapy was over, we decided to take advantage of her good mood and take a trip to the Aquarium. Both kiddos enjoyed themselves. Ryan insisted we make two passes through it. He really was thrilled to see the mermaid...she gave him a lizard tatoo! Afterward we came home and squeezed in a quick poo and a bath before the nurse left. Busy day. Reagan had a few sensitive moments today. She got a little vocal/over stimulated at the aquarium so we had to put her noise cancelling head phones on...but she also started crying during her bath! I think it was because we were talking, but who knows. And another thing I noticed...both times I picked her up to carry her up/down the stairs, she got vocal, like something was bothering her (seemed like it might have been her hips). She was fine the rest of the night. We were careful to not talk too much and keep the music on tv to a minimum, so we avoided any more outbursts. A little worried but hoping we can continue with good days for my girl!










Sunday, July 9, 2017

What a wonderful girl

Both kiddos slept well but were up and at em by 7am this morning. Reagan has been absolutely precious again today. Just in the best, most smiley mood ever. Super laid back. Super sweet. Loving these good days!!! It was another lazy day around the house, but so much fun when you have such a wonderful girl to enjoy!! Keep them coming Reagan!!!