Thursday, June 22, 2017

Low tone and easy going

Ryan had his last day of camp today. He really seemed to enjoy it and his reports got better and better each day. This morning when I got back home after dropping him off, my phone alerted me I had one hour until Reagan's 6mo check up with her special needs pediatrician. Oops. Almost forgot. It was a looooong appointment and we went over every detail of the last several months. Specialists she's seen, issues she's been having, etc... A big focus was the bad days she's been having lately. He drafted an email to all of her specialists to try to come up with a better plan for managing her pain during these episodes. Hopefully they are able to put their heads together and come up with something. I mean, she's only been dealing with these for 7 yrs now. They also drew labs to check blood counts, vit D, seizure med levels, just about everything. Reagan was a pro, as always. We finally got out of there nearly two hours later...and then had to really rush to go pick up Ryan! Reagan had OT this afternoon and did well with that, while Ryan had swimming lessons out in the scorching sun! I honestly felt like I had heat exhaustion today after getting home from his swim lesson. It's just so scorching hot outside! And my car...read 114 degrees when we got back into it! That definitely didn't help! I ended up with a major headache that lasted the rest of the night! Reagan took a little nap after OT and then woke up still super spitty. She has been very spitty all day today. Dripping like a faucet on our way to the drs appt and then requiring lots of wiping this afternoon/tonight. She has been a lot more relaxed and easy going than I've seen in a while, so maybe that's why. Hoping that means she's headed for a happy/relaxed weekend.




Wednesday, June 21, 2017

Less tone, more spit

Reagan slept last night and woke up early this morning. She's been pretty tense/serious again today, but stable. She did bite her hand again during speech. This time not nearly as bad as the time before (superficial instead of deep), but it's still red and we're trying to keep it out of her mouth so it can heal. She's had an OK day today. Still not back to her easy going self, but way better than the weekend that's for sure. This afternoon/tonight we noticed she was a little spitty/gaggy. Making weird mouth movements trying to hold the spit in her mouth. I'm not sure if it's actual nausea or more related to tone. She seems to have had a decrease in tone so that's definitely a possibility. Hoping that goes away and everything is improved by tomorrow. It's about time for some smiles for my girl!

Waiting to model! Can't wait to see these pictures! He was REALLY hamming it up!


Tuesday, June 20, 2017

OK but still not back to baseline

Reagan slept last night and woke up serious but OK today. She's been calm but still on the stressed/tense side. Chewing on her hands. Sensitive. Very gassy. She seemed a little better this afternoon. She did OK watching Tangled and then did well with her OT this afternoon. Her PT is still out til next week. The rest of the afternoon/night we just took it easy. Tried our best not to aggravate her. Really hoping she's gonna mellow out soon and get back to her happy self. Still waiting...

Our sweet Bear dog! He looked like a bat when he laid upside down! 😝 Miss him but not his hair!

Monday, June 19, 2017

Still miserable

Last night was a rough one as well. I got up 3-4 times trying to calm her down, but it proved futile. It was rough. For everyone. And then this morning, she woke up miserable once again. When is this going to be over?? It definitely feels like this is an all time record of consecutive bad days. She did have speech this morning and actually did fairly well (all things considered). She started back up crying/fussing right after her therapist left, but at least she made it through her only therapy for the day. Ryan had a camp to go to from 8:30am-12:30pm today so I dropped him off and then attempted to go get some tires changed out on my car (I had a screw in one of my tires). Well that turned out to be a complete disaster. After going to 7-8 different places, I finally found one that could do the work right away. Unfortunately there was probably a reason no one was there in the first place. Right as they were finishing up my tires, someone put the lug in crooked and then it broke off in my wheel. They couldn't get it out and had to replace the whole part. I sat there all morning and my dad called me back just in time to get Ryan from his camp. And then rescued me from the tire hell hole. Meanwhile Reagan was still at home with her nurse, giving her hell. Ugh. We did manage to get a much needed poo out of her and give her a bath this afternoon. We even got a few laughs out of her (really her laughing at herself more than us). But she continued to be fussy/uncomfortable/miserable most of the night. She'd go periods where she'd be OK and then she'd start freaking out again. As of now, she's in bed and asleep and I'm PRAYING she'll stay that way. So ready to see some smiles again. It's been too long.

Batter and chatter camp! 


Practicing modeling! He's got another photoshoot Wednesday! :)

Sunday, June 18, 2017

Another rough one

Last night was rough. My girl kept waking up crying...we just couldn't seem to get her comfortable. She slept for stretches, but it was short lived. And that basically sums up her day today. She's been OK for short stretches but miserable most of the time. Lots of tooth grinding, lip smacking, biting, and flailing. Calms down or falls asleep momentarily when I hold her, but the second I try to move or lay her down, she wakes back up and gets upset. Ugh. I'm not sure what to do. Tonight the only place she seems semi comfortable is in her chair. In her tomato chair and with her arm restraint on and she finally fell asleep. Praying she stays that way, but who knows.

Happy Fathers Day to Mike! This is Ryan's idea of letting him sleep in! ;)



Saturday, June 17, 2017

Bad day

Reagan slept well last night and then woke up this morning still super stressed. I was really hoping she'd wake up feeling much improved, but not yet. Not even close. She's been super tense and super crunchy. Still very neurologically off. Fussing and biting and grinding her teeth. Today is without a doubt a bad day. She's miserable. The only time she's calm/comfortable is when she's sleeping. And unfortunately today she's not sleeping on her own at all. Only with the help of medication. And even the medication is only helping her sleep maybe 2hrs at a time before it wears off and she's miserable again. We're having to stagger her doses to try to give her some coverage. Poor sweet girl. Hoping this is over quickly. I hate seeing her in pain and so zoned out (she was zoned out long before the medication). As we've learned over the last 7yrs of these cycles...there's really not much we can do except try to make her comfortable until her body snaps out of it. It sucks. For everyone. Thankfully Ryan and Daddy got out for a few hours this morning and went to a special needs event at a local pool. We were really hoping we'd be able to take Reagan, if at least just for some time out and in the sunshine, but that was a no go. I stayed home with my girl and Mike took Ryan to frolic for a while! He looked to have had a blast. Playing on the splashpad, sliding down the slide, and jumping off the high dive! I think he had a good time. Hoping for a better day tomorrow for my girl...for us all!!







Friday, June 16, 2017

Sleeping the bad away

Reagan was OUT last night when we finally got her to bed. I thought she'd sleep the whole night through. I was wrong. It all started around midnight, when Ryan woke up crying and then ended up in bed with us. He must've been having a bad dream or something because it took him a while to finally calm down and go back to sleep. And then Reagan started fussing. I went in and found her sideways in bed. I straightened her out and put her back under her covers and she fell back to sleep. She woke back up an hour or so later fussing once again. Again I was able to just tuck her back in and she went back to sleep. Then around 5:30am or so she woke up again and was upset. This time requiring medication to help ease whatever it was bothering her. And from then on she was out. She slept the entire day. Through diaper changes. Through her nurse's assessment. Through everything. All day long. She didn't wake up until right around 7:30pm. Her pump had run out and was beeping. I went in and got her bag/pump, she was still out. She needed a little more formula added to it so I made up some more and then took it back upstairs to hook her up...and she was awake! She was SO tense. Crunched up into a ball and rolling back and forth (hands completely tangled up in her hair). Eyes very zoned out but wide open. I brought her downstairs and it did not get better. She was super sensitive. To light, to noises, to me even touching her. I held her on my lap but she would just go back and forth from stiffening out like a board, to crunching back up into a ball and whacking me in the face with her arms. She was trembling with the constant tension in her body. I finally gave up fighting with her and laid her down on the floor but she just got worse. I eventually had to give her something and she was finally able to relax and fall back asleep. I guess we're lucky she was able to sleep the day away today because she's obviously still not feeling well and definitely uncomfortable when awake. Poor girl. Still very neurologically off today. Hoping she can sleep it off tonight and wake up tomorrow and have a good Father's Day weekend. Please keep her in your prayers!

This was Reagan hence the bow and long hair!

Working on letters and tracing.

Thursday, June 15, 2017

Not a good day

Reagan was awake and vocalizing this morning around 6:30am. I went in to check on her and she was laying completely on top of her covers. I tucked her back in and told her to go back to sleep and she was quiet for another hour. Then just before 8 she started back up again, so I moved her to her therapy room and put on cartoons. Ryan slept in this morning, not waking up until around 9am. Love that. That means he wasn't in our bed at 4 or 5am waking us up (which has become the norm lately). Reagan has been pretty crunchy and tense all day today. Lots of vocalizing...in an unhappy way. This morning her nurse saw her doing the fixed head turn (aka seizure) and we saw something else questionable this afternoon. She's definitely just all around off today neurologically. Tooth grinding. Super sensitive to talking. She only had one therapy today, OT. Just before therapy she was starting to freak out a bit. Thankfully her OT knows her very well and was able to try some relaxing techniques with her and at one point she even fell asleep for a few minutes! Sweet girl. It was not a good day for my girl today. Tonight our nurse stayed late so we could meet up with our Bible study group for a pot luck dinner. It was nice to get out but I was worried about my girl. She was getting increasingly tense and was super stressed by the time we got home. She was able to finally doze off with the help of some medicine and mommy's tight squeezing. Thankfully Dad was able to get her moved to bed, now we're just praying she can stay asleep!



Ryan was craving pizza so we stopped for a quick slice at whole foods!
He was super happy to get to eat upstairs where he could people watch!

Practicing writing his name...on our fence!

Swim lessons

Wednesday, June 14, 2017

Spitty/rolly girl

Reagan has had a pretty good day today. She had speech this morning and then school this afternoon. She's still going to town on her hand, needing an arm restraint off and on to try to give her hand a rest. And getting so spitty from chewing on her hands nonstop, I had to completely change her clothes out tonight they were so damp! Silly girl. She's been super squirmy again tonight. Rolling around and squirming off her floor mat and turning herself completely around! She's a mover and a shaker!


Ryan's drawing of Reagan (with some direction from me, but all on his own)...I was very impressed with the picture and her name!
He also did a really good job writing the alphabet today!

Tuesday, June 13, 2017

A bit kooky/sensitive

Reagan's had a pretty good day again today. She had PT and OT today. She was a little sensitive to talking and a bit kooky/vocal but still did well. I bought the Batman Lego movie today and she tolerated (just barely) us all watching it with her this afternoon. I did have to threaten her brother a few times because his constant bouncing on her swing was about to drive her crazy! Tonight we've had to be a little careful with talking but she's held it together. She definitely lets us know when she doesn't like something! Hoping she's not trending in the wrong direction.

Monday, June 12, 2017

Oh Ryan!

Reagan had a good day today. She was super into her hands and chewing on them nonstop. It did interfere a little with speech this morning, but over all she did a pretty good job. She was most comfortable on the floor today, such a rolly polly. We had to constantly keep moving her back up onto her pillow, she was all over the place! Ryan gave us a good scare this morning. We're still not sure whether or not he actually did anything. I was upstairs helping the nurse with Reagan, when I heard Ryan calling me. I came down as soon as I could and Ryan was pointing to his mouth and telling me it hurt. Finally he said something along the lines of putting a screw in his mouth and now it was in his tummy (and his mouth hurt). Ugh. I gave him some toast and a drink and he seemed fine. Telling me his tummy was all better. I'm still not sure if he actually ate anything or not. Dad had been messing with some water heater parts in the living room the night before and we thought we had picked up all of the pieces/screws...but who knows. We never heard another word out of him about it, so we're just going to keep a close eye on him. This boy! Never a dull moment.








video

Sunday, June 11, 2017

Lazy Sunday

Reagan slept well and woke up a quiet and hot girl this morning. Not really sure what was going on but she was like a little oven when we took her out of bed this morning. Her arms, legs, body...all hot! Her forehead felt ok though and when I checked her temp it was 97. Very strange. She's been sweet and pretty easy going all day today. Only some slight sensitivity with her eyes and some teeth grinding when I hold her. Poor thing woke up with two mosquito bites this morning. One on her arm and one on her face! Ugh. She's so sensitive to them (they're bright red), who knows how long it will take for them to go away! We didn't do much today. Reagan and I laid around the house pretty much all day. Mike grilled tonight and then went swimming with Ryan. In the last week he's learned how to swim down to the bottom of the pool to retrieve things. At first Mike was having to push him down, but something clicked this week and all of a sudden he's swimming all the way down even in the deep end!! It's crazy! Mike was working with him today with diving. Not quite there yet. A lot of belly flops, but he didn't seem to mind! Such a silly boy.


Saturday, June 10, 2017

Sweet girl

Reagan slept well last night and then just kept sleeping this morning. Or so we thought. I checked on her first thing in the morning, but her eyes were still shut. I kept peeking back at the monitor and she was very still, only moving occasionally and never making a peep. Finally around 10am we went back in to check on her and she was just laying there wide awake! Totally still and quiet, but wide awake. Silly girl. Who knows how long she had been laying there. Usually she doesn't hesitate to let us know, giving us a very loud vocalization letting us know "I'm awake! Come and get me!!!" She woke up much less serious today. Smiling from the get go. Still very quiet, but no shortage of smiles today. She's been pretty precious. Very cuddly and sweet. She's dozed back off a few times today...once when I put some warm laundry on top of her! Sweet girl.


Friday, June 9, 2017

Still serious

No smiles again today. Super serious. I've tried and tried to get a smile out of her and the closest I've gotten is just the tiniest crack of a smile. She's been a tough cookie. And still a little sensitive. I was busy running around with Ryan all morning. We went to a movie and then ran several errands around town. By the time we got back, Reagan decided to dose off. She then slept the rest of the afternoon (of course...because we needed to give her a bath), not waking up until around 8pm. She woke up in a decent mood and was a good girl the rest of the night. She eventually dozed off on my lap. Sweet girl.





Thursday, June 8, 2017

Super serious

Reagan has definitely been a little on the tense side today. Gone are the smiles of the last few days, replaced with a super serious face. There was definitely an increase in tension in her body, but she still did well with both PT and OT. Tonight there was some major teeth grinding when I held her trying to get her to fall asleep. Hoping she loosens up and can get some sleep tonight.

Wednesday, June 7, 2017

Wonderful girl

My girl has had another wonderful day again today. She's been in great spirits. Very vocal and laughy. Super sweet. She only had one therapy today, speech this morning, and while cooperative, she was a bit distracted by gas (hers not her therapist's). Definitely having some tummy issues, but while distracting, they don't seem to be "hurting" her. She actually had two poos on her own today which is awesome. These days she doesn't go much on her own, so it's always good to see her able to get it out by herself. Still pretty gassy. But just so adorable. She's had a great day. Super laid back and happy but still going to town on that hand. Very spitty. Completely soaked both sleeves of her pjs tonight! I had to do a complete outfit change on her before bed! Silly girl.



First happy meal! SO excited about the toy inside!!