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!!!

Saturday, July 8, 2017


Reagan slept well last night and even slept in a little this morning, not waking up until after 9am. She woke up happy though, so for that I am thrilled. She's actually been beyond precious today. Just wonderful. Super smiley and sweet. We couldn't ask for a better girl. She was still a little sleepy after her bath this morning, but it didn't last long. She's been awake and happy pretty much all day! Thank you, thank you! Was hoping for a good weekend for my girl!

Friday, July 7, 2017

Super sleepy

Totally unexpected but Reagan had a super sleepy day today. She slept well last night and then just kept on sleeping this morning! She was OUT. Unfortunately, she wasn't peeing so her nurse eventually had to move her out of her bed and use the warm water trick to get her to go! She never woke up, but was not an easy patient. She did eventually go, but not without several attempts. And then she slept the rest of the day, not waking up until 8pm tonight! She woke up happy but a bit kooky. Wide eyed and a little sensitive, she was a turkey! She wasn't really falling back to sleep on her own either and eventually required clonidine to doze back off just before midnight. Hoping she can sleep tonight after sleeping all day! Silly girl.

Thursday, July 6, 2017

Swim at last

Reagan had another pretty good day today. We had decided yesterday that we were going to try to get her in the pool this morning for the first time! She was in good spirits and seemed up for it. She's a little more tense/vocal today, but good. We put her in one of her many new swimsuits and took her outside to the pool. First we tried out the giant duck! She actually does pretty well it it. It made me a little nervous when she'd roll over to the side, but overall she was pretty stable in there. Then we eased into the pool. It was only 86 degrees (I'd like it closer to 90 for her), but it didn't seem to bother her much after the initial shock. Her brother was a challenge. For some reason, maybe because he's just recently perfected the art of swimming underwater, all he wanted to do is swim under her (like an obstacle). He made me very nervous and I had to keep shoeing him away! Crazy boy. Reagan stayed in the pool 30-45min and then went upstairs and got ready for her bath. Ryan and I swam for a while afterward, so I could give him some much needed individual attention. Afterward we came inside and we gave Reagan a bath. She had PT not long afterward and did OK with that. She's definitely more tense today. Just not as compliant. She did seem to enjoy side stretches though, so that's good. She had a little break and then it was time for OT. She did well with that, but then again she always does well for her Occupational therapist. Overall she's just been a little more sensitive today (to talking, tv and her brother) and a little more tense in her body...but still good. Hoping for continued good days for my girl. I don't like the fact that we're already seeing an increase in tension again. :(

Brother got in big trouble for this! Jumped on the float and then it floated on top of Reagan!
Thankfully I was right there to (yell at him) and pull the float off of her! :/

Wednesday, July 5, 2017

So sweet

Reagan had another great day today. Slept well, woke up vocal and happy. Super sweet. Very smiley. Hands in the mouth a lot and very spitty, but good. She had speech this morning and did great with that and then had PT shortly thereafter. A great day for therapies today. Such a sweet, interactive girl. This afternoon I took Ryan by the aquarium. It was packed with a big tour group (very deceiving...there was no bus so I assumed no tour groups were there). He didn't care though and still had a great time. Need to find a good day/time to bring Reagan. Glad she wasn't there for this trip. Just WAY too crowded today. Note to ahead. No swimming today. If you can believe it...we were just TOO HOT to go back outside! Very hot today. Thinking we might try to get in the pool tomorrow morning with my girl! So many cute bathing little time! Tonight Reagan did have a weird seizure like episode while I was holding her. She was just laying there, dazed with her mouth open for a while and then she turned her head sharply to the left and stiffened out a bit for several seconds and then she snapped out of it. A little different that what we usually see. Not a fan of seeing ANYTHING that resembles a seizure. Not a fan.

Tuesday, July 4, 2017

A happy fourth!

Thank God. Reagan made a HUGE turn around and is 100% better today! Wow, what a difference a day makes! She was still pretty miserable last night. Waking back up around 1:15am screaming/crying. She fell back to sleep and slept...unfortunately I can't say the same for me and Mike. Mike was cooking a brisket and his thermometer alarm kept going off. All night. It kept waking me up, but he actually ran downstairs each time to check on it! Talk about a long night. Around 6am or so Reagan woke up and was laughing and cooing. Our happy girl was back! A switch has flipped and she's back to normal once again. Super smiley and super sweet and happy! Hands back in the mouth. All is right with the world. We had a Fourth of July get together with family and our neighbors. It was HOT but nice. Good food, good company, we all had a great time! So thankful it turned out the way it did. When Reagan is happy, we are all happy!!! Tonight we watched fireworks in the culdesac and we all crashed. Exhausted. Sweet dreams!

Monday, July 3, 2017


Reagan had a MISERABLE day today. Just miserable. When she was awake, she was miserable and crying. Last night was awful. She was up off and on all night. Totally miserable. Just plain awful. And today wasn't much better. Thankfully she had a nurse today. Medicine helped some, it would allow her to sleep for short stretches, but usually only an hour or so. Ugh. So frustrating. My poor sweet girl. What is bothering her? We don't know exactly. But you can certainly tell it's some sort of pain. She's been cycling in and out of these episodes for years and no one has ever been able to figure it out. It's very upsetting. Praying she can get some sleep tonight and wake up feeling better tomorrow. So hard to see our girl like this.

Sunday, July 2, 2017

From tense to BAD

Reagan was wide awake and turned completely upside down in her bed this morning when we got up. She was in a good mood though and we brought her downstairs. Her body was very tense and although calm, she just wasn't nearly as smiley as she was yesterday. Definitely more tense. She was still dry and I eventually had to help her go, but she went fairly easily and it was a lot. Not too much later (right around 10:30am), she started getting upset. Fussing and crying, something was definitely bothering her. With the help of medicine she was eventually able to fall asleep and get some relief. Unfortunately, it seems we're in the midst of a bad day. We weren't really anticipating it, but I guess we did have a little warning. She has been getting more tense in her body the last couple of days and she's a lot more restless at night (and waking up early in the morning). The rest of the day she was miserable when awake. Every waking moment. Ugh. Poor girl. Medicine seems to help her sleep it off a little, but as it wears off, she wakes up and is miserable again. I'm afraid it's gonna be a loooong night. Really hoping this is a one day thing and she feels better by tomorrow. Prayers for my girl please!

Saturday, July 1, 2017

Still happy

Reagan woke up again around 5 or 6 this morning. Very vocal, but still very happy. Such a sweet girl. She's been still very into her hands today. Lots of spit. I've been putting the arm restraint on her off and on to try to give those fingers a break. She's got a little crack on her thumb right now that's going to have a hard time healing when it's this soggy. I think all of the spit is actually what caused it to crack, right along her knuckle. Ugh. This girl. She's been in a good mood though. Very content. A little sensitive in her eyes and to music on tv, but good. Very talkative. Hoping these good days just never know with this girl.

No idea when this tooth came out! I just noticed this today! 😲