Monday, July 31, 2017

Precious girl

Reagan had another good day today. She had speech this morning and did really well with that and then school at noon. She was in a great mood so she did really well with both. She's gotten increasingly vocal and tense in her body as the day has gone on. Still in a great mood, just much more tight in her legs (very noticeable during diaper changes). Lots of hand in her mouth...those poor shriveled up fingers. She's been pretty precious again tonight. Both Mike and I dozed off on the floor beside her tonight but she was just not taking the bait. She was especially difficult to get to sleep and kept waking the second Mike would try to get up. Not super confident in her getting much sleep tonight.

She doesn't wear her glasses often, usually she'll just immediately knock them off! Today she left them alone!

Sunday, July 30, 2017

Sensitive but surprisingly good

Reagan had a surprisingly good day today. She was so floppy and out of it when she went down last night that we thought we might be headed in the wrong direction (the calm before the storm)! But she's been super sweet and darling today. Still sensitive...she almost lost it when Mike was talking on the phone this morning...but as long as we weren't talking over her (to her was OK), she was fine. We took a drive this afternoon through the hill country in our new car. It was nice. Reagan fits so nicely in this car and it even has a hook on the seat in front of her, perfect for hanging her backpack (pump/formula) on! Reagan dozed off for a bit in the car...unfortunately the cranky boy did not. He's had a bit of an attitude today. Giving us nasty looks, getting frustrated with the tv in the car, etc... After our drive he went with Grandpa and his cousins to their neighborhood pool. He must've been quite the handful, because when Grandpa brought him back he looked a bit disheveled. Ryan wants to swim all over the pool and doesn't really grasp or care to grasp the concept of not swimming in the roped off lap swimming lanes! Ugh. Hoping my girl can get some sleep tonight. As of now she's still wide awake!




Saturday, July 29, 2017

Lake afternoon

We all slept well last night and everyone woke up good to go. Reagan was calm and content. Not quite as squirmy today. A little more still. Mike spent most of the morning haggling with car salesman, but finally made it home at 2pm with our new car! Reagan dozed off on the floor right about that time and continued to snooze off and on the rest of the afternoon. At 3pm we left Ryan and his two cousins with a babysitter and Reagan with her nurse, so we could go out on a boat with my stepsister to celebrate her 40th birthday! It was the hottest day of the year topping out at 106, but thankfully on the water it was still comfortable. We had a fun time, everyone (including me) went tubing behind the boat. In my opinion, it's much more fun to watch everyone else than to actually do it myself. When we got home we found both kiddos looking very sleepy! We were all pretty exhausted and tried to get to bed as early as possible. Unfortunately, as I was giving Reagan her last medicine (her seizure medicine...the most important one), I saw that her extension had popped out! I'm not positive when it happened, but I think it happened before I gave her most of her medicine, so that means instead of giving her medicine into her tube, I just shot it all over her in bed! Unfortunately there was no way for me to know for sure, so I couldn't really give her another dose. As it turns out, the whole bed, her clothes, and diaper were all soaked so I had to put a pad under her, change her clothes and diaper before all was said and done. What a mess. Poor girl. She was trying to sleep as I did all of that. Hoping for no more tube drama tonight.





Friday, July 28, 2017

A new car

Yesterday my car was in the shop and we got some bad news. The A/C needs major service as well as 4 new tires and front and back end alignments! Needless to say, we decided it was time to step up our new car search. We've known for a while that we needed a bigger car for the kids, but we never thought my car would be the first to go! So Mike took the day off and we checked out our options. Ryan hung out with Grandpa and his cousins while Reagan slept in until 1pm! She woke up a little serious but calm. She was slightly sensitive to noises and talking. We looked at a couple of minivans and one slightly larger (but still low to the ground) SUV. We brought by the Chrysler Pacifica (the first minivan we've ever checked out and the frontrunner) and we put Reagan's carseat in and drove around the block with her. It's nice because her carseat has the option to recline, but we've never been able to take advantage of that in our SUV. In this car, we can slightly recline the seat so that she's no longer forced to sit straight up and down. I think this will really work well for her. It also has an entertainment package so both kiddos will have screens in front of them to watch. That will be particularly helpful on long trips. And of course, just more space for everyone! Very exciting! We didn't buy anything today (we took it back), but after talking it over tonight I think it's the winner. We also really liked the new technology in the Honda Odyssey, but pricewise there were no incentives on the new 2018's and it just makes more sense financially to go with the Pacifica (plus the Pacifica has lots of great features too and I prefer the exterior look of the Pacifica to that of the Odyssey). The rest of the day was pretty smooth for my girl and she actually was pretty good tonight. We had to be a little careful at times, but she really has been pretty precious! Not really sleepy though (after sleeping in til 1pm this morning), so she didn't doze off until sometime after 12:30am when I laid down beside her on the floor (and we both fell asleep)! Sweet sweet girl! Mike and I didn't get to bed til almost 2am. Glad I don't have to run in the morning...

Thursday, July 27, 2017

Busy but content

Reagan was a little more restless last night. She was content, but talking off and on throughout the night. This morning we found her once again laying uncovered, sideways in her bed. Not surprising considering how squirmy she was last night! She's been in a great mood today. Very laid back. Talkative, but not kooky or stressed at all. Chewing on her hands a lot (of course). She had speech this morning and did great with it. We did have a little interruption...the DME rep came by to adjust her carseat and the new headrest on her wheelchair. Unfortunately, I had completely forgotten about our appt and my car was in the shop (with Reagan's carseat), but she was still able to make some helpful adjustments to her wheelchair that I think will be helpful. She lowered the headrest a little and moved her left lateral support up to keep her from leaning so much to the left, while tightening the lower right strap. It definitely seemed to straighten her up a little. Hopefully it works! She only had about 30min rest before PT came. She did a lot of stretching and worked on tall kneeling (which she did much better with compared to Tuesday). Again, only about 30min rest before OT. Reagan was really trying to doze off but she perked up just before she got here. She did well with OT and then finally had some time to take it easy! We squeezed in a late afternoon bath and my girl was good to go. A busy, but super content day for my sweet girl!

Wednesday, July 26, 2017

Speech victory

Reagan was a bit restless last night, moving out of her covers and all over her bed, but I do think she still slept for the most part. Every time I checked on her, she was asleep but usually uncovered and upside down in bed! Silly girl. She woke up around 7:30am in a decent mood. A little serious, but content. She had a good session of speech this morning. Her therapist said she hit her "I have something to say" button 5 times today and it was very intentional. We also had another major victory today when I received a call from the insurance company saying they reversed their denial of half her speech visits and they approved the full amount! I guess all of my calls and literally 80 or so emails to state representatives did the trick! Our therapy company said that they have never seen anyone get it reversed this quickly without even having to wait for an appeal! Yay! One small victory. Her PT and OT are both up for reevaluation soon too, so I'm hoping maybe they'll examine it a little more closely this time and know we aren't going to allow them to cut services that she clearly deserves. Always a fight. The rest of the day was pretty uneventful. Reagan was very into her hand, so her nurse kept her arm restraint on as much as she could to try to keep it out of her mouth. She was in a good mood though. Laughy at times, very talkative (and tooty) tonight. Super happy to just roll around on the floor but very difficult to hold! Hoping we can get her to settle down and go to sleep. It's 11:15pm and she's still looking pretty alert! This girl. Such a darling.

Wednesday, July 19, 2017

Trip

I will go back and type out the details of our trip...just know we went and are now back and all was good.

Tuesday, July 18, 2017

Still awful

It was a rough night...and unfortunately today hasn't been any better. Reagan didn't sleep much and was very agitated/restless. My poor baby...when will my girl get some rest? Not today. It's been an AWFUL day. Just awful. She's so exhausted but her body wont let her sleep. She dozes off, only to jolt awake seconds later, back arched and legs stiffened out. It's painful to watch, so I can't even imagine how she must feel. It just sucks to have had such a great week and then to get blindsided by this?!?! Nothing is helping. Nothing works. She needs to sleep it off, but she can't. My poor baby. Tonight we were able to see a slight light at the end of the tunnel. I think (I hope) she'll be OK tomorrow. We were planning on taking a trip to Dallas to see Grandma and we've already had to delay it by a day! Hopefully she'll be up to leaving tomorrow. Prayers for my girl please!

Monday, July 17, 2017

AWFUL

So today (and last night) was brutal. Just AWFUL. My girl has had a terrible horrible no good very very bad day. Crying nonstop. No meds seem to be helping in the least. Her complex care dr even called in some muscle relaxer because he thought maybe she's having muscle spasms causing her pain (very likely)...unfortunately those didn't seem to help her either. The first dose helped the most...for about two hours...but zero help after that. Ugh. It's SO hard to watch her like this. So frustrating for us. And just brutal for her. Thank God for our nurse today. Seriously. I was up and down with her most of the night, so it was good to have some moments today where I could step aside for a breather, because I know we are in for a rough one tonight. Please keep my girl in your prayers. We had big plans for this week and not sure what's going to come of them. I'm not super hopeful for a complete turnaround by tomorrow. :(

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

Happy

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 self...call 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 suits...so 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!