Wednesday, May 31, 2017

A visit from Megan

Reagan slept in again this morning. Woke up just after 10am, but was a little serious so speech was a no go. She loosened up after a bit and was quite smiley and sweet. She got a little sleepy again and took a little nap before noon, but was back awake by 12:30pm when her favorite nurse Megan came for a visit (with baby)! Reagan was super smiley and happy to see Megan...a little less thrilled about baby Hayes! Babies make lots of noises...noises that resemble the bird house at the aquarium (NOT Reagan's favorite). She managed to hold it together and everyone got along. She even allowed him to play with her favorite snake! This afternoon she was still a little groggy. Not really into anything, just content to lay on the floor cuddling her snake. Tonight was about the same. She was pretty precious though.

Tuesday, May 30, 2017

Good day

Reagan had a good day today. She slept in until 10am but woke up and was awake and ready to get to work! We got a much needed poo out of her early today, so she ready to go for her therapies. She had good sessions of both PT and OT today. We squeezed in a bath afterward and my girl was good to go. Good day/good night! If she's still good tomorrow, nurse Megan is going to come for a visit! Fingers crossed!

Monday, May 29, 2017

A sleepy Memorial Day

It was another good day today. Reagan had a nurse and Mike was off work, so we all just took it easy today. No therapies. Reagan was super sleepy and actually slept the entire afternoon/night. This afternoon Grandpa came over and swam with Ryan and then we BBQ'd and everyone ate like kings (we cooked enough to eat it all week). My sweet girl never woke up. Hoping for a good week this week!

Sunday, May 28, 2017


Today was a better day for my girl. She wasn't nearly as tense today and we even got out and went to Grandpa's house for a bit while Daddy/Ryan played tennis! Mike played some with my Dad and Ryan went out and attempted a "lesson" with my step mother. It was HOT outside so Reagan and I just hung out watching from inside the house (they have a tennis court that backs up to their house). Ryan was worn out afterward! All in all a much better day! Hoping for a good week this week!

Saturday, May 27, 2017

Good but crunchy

Ryan ended up in our bed at 4:45am after a trip to the potty. This boy. When is his tummy going to be normal again?? Reagan slept well last night and we all actually slept in this morning. I heard Reagan vocalizing around 9:30am and I got up. Ryan and Mike continued to snooze. Reagan was vocal and sweet. She's had a good day today. Still super tense in her body. Very "crunchy" and putting her hands in her mouth so much her face/hands are constantly wet! I've been toweling her off all day today to no avail. Ryan went swimming this afternoon with our neighbors. They were loving the new duck float! I was just praying they wouldn't pop it on only its second day in the pool! They all had a blast. Hoping for another good but little less tense day tomorrow for my girl.

Friday, May 26, 2017

Kooky but good

Ryan was in our bed by 4am and Reagan was up and vocalizing by 6:30am. These kids! I was just happy Reagan made it that long, after the rough time she had going to sleep last night. She's actually had a pretty good day today. A little kooky, but good. Definitely wanting attention. Any time her nurse would walk off, she'd instantly get vocal. She took a long nap this afternoon but woke up in a good mood. No therapies or school today. Still super crunchy/hands in mouth. Still has the red hands/feet and right ear. Not quite right. Hoping she can settle down and go to sleep a little more easily than last night.

Brother in the pool. He's a fish.

Thursday, May 25, 2017

Good day, tense night

Reagan had a much better day today. She slept well last night and woke up feeling a little less on edge. She had PT this morning and rocked it! She was working on sit to stand and she was actually pushing up through her legs! She did seem a little sensitive on her right foot and kept picking it up. Not really sure what that's about. It's usually her left side (that's tighter) that gives her trouble. She still had a great session though. She had a little break and then had OT. She did really well for OT as well. Her teacher came this afternoon and she had a great session with her too. This was her last class of the school year so I'm glad it ended on a high note (of course she only has one week off and then she starts extended school her teacher will still come out once a week). Grandpa came over this afternoon to swim with Ryan. We inflated the new blow up I bought...derby duck. It holds up to 300lbs and multiple people. I thought it would be great for Ryan and something stable enough that we could put Reagan on it to float around the pool. It's pretty giant! We may need a bigger pool! Reagan had such a good day with her therapies, but as the night wore on, she became more and more tense. She wouldn't tolerate the floor at all. When we tried to move her out of her tomato chair and onto the floor, she'd immediately start fussing. And getting her to bed? It was a total disaster. She was miserable. Mike finally moved her to her tomato chair and she instantly fell asleep! So crazy. Sometimes she just does NOT want to lay down. This was one of those nights. Hoping she stays asleep!

Wednesday, May 24, 2017

A birthday party

It was rough last night. Getting her to sleep was quite tricky. Mike had laid down with her but the teeth grinding was out of control and she was so stressed. Finally he put his finger between her molars and she stopped. She'd try to bite down (gently) but when she realized she couldn't, she stopped...and then fell asleep! Whew! Thankfully she slept through the night. She did wake up still very crunchy and tense this morning, but calm. She was holding her pee this morning but her nurse was able to get her to go with water. We weren't sure how speech was going to go this morning, but she actually had a great session. She also had school this afternoon and did really well with that too. This afternoon we went to her little friend Carley's bday party at Jumpstreet. I was nervous about my girl because she was nearly in tears just putting her into the car to go. I actually jumped out of the car and put her noise cancelling headphones on her and I think that helped. It was very noisy at Jumpstreet. Lots of music, people talking over the intercom, kids...but she held it together. She even managed some kooky smiles! Several of the girls there already "knew" Reagan (kids in Reagan's class) and they came up and told her hi. It was sweet. There really wasn't anything for Reagan to do there, but seemed content to just sit back and watch. Ryan had a blast. Amazingly Reagan was in good spirits the whole time. SO glad we were able to go. We came home and twice Reagan started crying...both times when she peed! Not sure what that was about, but I sure hope it's not another UTI. Thankfully she calmed down pretty quickly each time. She was super sensitive tonight in her eyes. The A/C was blowing on her and she kept flinching. Her nurse mentioned before she left that there were a couple of times she noticed her staring off but it only lasted seconds and didn't appear to be a seizure. Maybe just a little neurologically off. Hoping for a less stressful day tomorrow for my girl. She dozed off peacefully tonight so that's a start!

Tuesday, May 23, 2017

Rough day

I'm posting this one right away (before publishing my other posts), because well we need some prayers! It's been a bit of a rough day today for my girl. She woke up a little kooky but OK. Very crunchy. Her circulation is still a bit off. Red hands...not cold but warm. Very sensitive to us talking, so we just had to be very careful. She had a dermatology appointment this morning and of course we would have to leave just as the garbage truck was making it's rounds through the neighborhood. Needless to say, she did NOT like that. She was very tense and almost in tears before we even got out of the neighborhood. Her nurse had to give her something to calm her down and then she settled down and even dozed off. She woke up eventually during the appointment when they had to check her moles. She has two we are keeping an eye on. The one on her back grew a little and the one on her hip stayed the same. She said both are very consistent in color and shouldn't be anything to worry about. We'll just keep an eye on them for now. We drove home and got here just as Reagan's PT was pulling up. She was still tense but her therapist was able to get some good work out of her. She had a short break (where she was attempting to doze off) and then she had OT. Private OT but her school OT came to observe. She did well for that except for the talking. Then she had another break and her vision therapist and speech therapist from the school came. She did surprisingly well with that making very clear choices between toys. Afterward she was still super crunchy so her nurse tried to get her on her tummy for a bit. Before she left she noticed her elbows were red but thought it was just from the time she spent on her tummy. I later noticed that the redness wasn't going away and was in fact little scratches all over her elbows! She was obviously pulling them in while in her wheelchair and got seriously scraped up by the Velcro! Poor baby! We will definitely have to make sure everyone is on the look out for that when in her chair. Tonight she's been super duper tense. Very crunchy. Grinding her teeth painfully loud. Pulling her hair and yanking on her tube. Not exactly sure how we are going to get her to sleep tonight. It's 11pm right now and she's grinding away even after clonidine. And I mean grinding! I've heard a lot of teeth grinding out of this girl and this may be the worst yet! I'm afraid she's going to grind a mouthful of teeth out! Poor girl. We don't know how to help her. I just rubbed some peace and calming essential oil on her and Daddy is laying down with her. If she could just fall asleep. It's not looking good. Please keep her in your prayers!

Monday, May 22, 2017

A bit spunky

Reagan slept well and woke up a spunky girl this morning. Very crunchy and tense in her body, but super smiley and sweet. A little kooky. No therapy today. Her speech therapist was out sick and there's no school today either (it was a bad weather make up day that they didn't need to use). She took a nice little two hour nap this afternoon, so at least someone took advantage of the down time. Ryan was home all day too (no school). This picture of him cracks me up. Watching Curious George Christmas Monkey movie, singing jingle bells, and wearing a Santa hat! This is definitely my son! I LOVE Christmas...any time of the year! He's been having some tummy upset the last couple of days so I guess it's good that he has an extra day off before going back to school. Hopefully he's feeling better tomorrow, I'd hate for him to miss any more school right here at the end.

Sunday, May 21, 2017

A bit sleepy

Reagan was such a little doll today. We were all dragging a bit because her brother ended up in our bed again last night (and then got up multiple times to poo)! Ugh. It's been a dreary weekend and today wasn't much different. It actually feels a little better outside because it's not nearly as hot and humid as it's been, but it's also been very cloudy looking more like fall than summer! All of these clouds and rain just makes me feel very lazy. So we've had a bit of a lazy weekend around here. No swimming today as it's a bit too cold with the lack of sun. Reagan has been super sweet and adorable all day today. She dozed off for several hours this afternoon and took the nap that I so desperately wanted to take. Ryan never naps though, he just goes nonstop, so no chance of that. Reagan slept like a rock though and nothing, not even her crazy brother, could wake her! When she woke back up tonight, she was just as adorable as ever! So precious and wonderful. Cuddly. Ohhhhh I love this girl.

Saturday, May 20, 2017

Quiet girl

Reagan slept well last night (better than her brother anyway...there was a storm that blew through and he ended up in our bed around 4am). Reagan woke up very calm and content. Such a sweetie. We spent a few hours together this morning just the two of us while Daddy and Ryan slept in! She's been very still and relaxed today. Still into her hand, but other than that, super relaxed. She was looking very sleepy this morning and dozed off and on. She was just so quiet all day. Her nurse worked tonight so Mike and I could go to a neighborhood poker night and she said that once Ryan went to bed, Reagan decided to get vocal for the first time today! Silly girl. When we got home she was pretty quiet again and looked like she might doze off. But she persisted, not falling asleep for good until Daddy laid down with her. Sweet girl. Hoping we all get some good sleep tonight.

Friday, May 19, 2017

Fun at the aquarium

Reagan was in a good mood today. No nurse so it was a mommy and me day for my girl. She's been super precious today. Just a doll. We face-timed with Aunt Amber and Grandma this morning. She was grinning from ear to ear! Such a cutie. No therapies. We squeezed in a bath and then went to the aquarium this afternoon with her little friend from school. It's been forever since we've been, but I finally renewed our membership, so we'll definitely visit often this summer! We all had a great time. Grandpa came along to wrangle Ryan...which was SO helpful. I definitely couldn't have done it without him. Everyone had a blast and Reagan got to see her friend...a good time was had by all. Hoping for a good weekend for my girl!

Thursday, May 18, 2017

Busy girl

Reagan has had a busy day today. She had PT at noon, followed by OT, and then school! She fell asleep only moments before PT, but woke up while her therapist was stretching her and actually had a good session. One weird thing, she seemed super relaxed and loosey goosey before PT and then after PT she was very crunchy and tense! Very odd. We weren't sure if she was just peeved about being woken up or if maybe something with the stretching made her uncomfortable. Hard to tell. Her OT came an hour or so later and worked with her trying to loosen her back up and it worked. Whatever it was seemed to get better by the end of OT. Then she had a late session of school, and did well with that too. Still lots of hands in the mouth again today...needing constant redirection to try to keep them out. This girl! A constant battle with these hands!

Wednesday, May 17, 2017

A little off but good

Reagan slept well last night and woke up in a good mood. She had a lot of redness on the outer edge of her right eye. Not 100% sure what happened but from what we can tell, she's pointing that left finger a lot and taking direct aim for her right eye! I cut her nails as they've gotten a little too long. Hopefully she'll keep those fingers away from her eyes! She had speech today and was a lot more interactive. Easily engaged. She's had a good day today. A little vocal and some teeth grinding but good. Her circulation is off. She's got cold/clammy hands and feet and the one red ear we typically see with dysautonomia. We had a night nurse tonight and Reagan was very vocal and putting her hands in her mouth nonstop. She was still raring to go when the nurse left at 10. Hoping we can settle this girl down and get her to sleep soon. Silly girl.

Tuesday, May 16, 2017

Sleeping and holding

Reagan slept well last night and then just kept sleeping today...the ENTIRE day! Her nurse finally moved her out of bed this morning to help her pee (she's holding) but she never even attempted to wake up! She just been snoozing the day away! She must need it though. She did finally wake up at 9pm tonight. She was sweet and content but still very yawny and she only stayed awake about an hour or so before falling right back to sleep. Sweet girl. She never peed on her own today, only with the help of warm water, but at least we didn't have to cath her. It's strange to see her holding on a day when she's so relaxed (and sleeping) all day. Not sure what causes her to hold the way she does, but just glad she went without having to be cathed! Hoping for a happy awake girl tomorrow!

Monday, May 15, 2017

Calm Monday

Reagan was very laid back and calm today. She had speech this morning and did OK with that. She did respond to a question on what she wanted to work on, but overall wasn't super interactive. Just very serious and quiet today. She was a little spitty this afternoon/tonight and kept trying to put her hand down her throat resulting in her choking herself. She settled down a little tonight and was so sweet and snuggly, I just wanted to eat her right up!! She eventually dozed off on my lap. Sweet girl.

Sunday, May 14, 2017

Happy Mother's Day

It's been a nice laid back mother's day. Ryan was back in our bed last night, so that was not ideal. Reagan slept well and woke up happy today. She's been a little sensitive in her eyes today, but otherwise good. Mike cooked breakfast and then cleaned the kitchen (best present ever). Then this afternoon Mike and Ryan put together my new grill (Mike does all of the grilling, but I'm the one that likes to eat it) and then they went swimming. Reagan and I sat outside and watched them. It was a little warmer today, so we didn't last long. My girl was getting flushed and I was hot myself. All in all, everyone had a great day. Hanging out with the fam, what more could I ask for! Great day!