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 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.


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!!

Tuesday, June 6, 2017

Darling girl

Reagan had a great day today. She woke up bright and early (she was awake and talking when I got up at 5am) but dozed back off, sleeping until right around 8am. She's been super sweet and smiley all day today. Very vocal and laughing off and on. Super darling. A great day for therapies. She had PT this morning and did awesome with weight bearing in her legs! So proud of her because this is an area she has a lot of trouble with. When she was little, she had so much tone in her legs she could stand up with assistance no problem. Once her seizures were controlled at 3yo, she lost all of that tone and has had permanent jelly legs ever since, so it's very promising to see her working at it and making progress now! Her teacher came this afternoon (she gets extended school year) and worked with her too. We figured we'd better take advantage of this great mood she's been in! She had a good session with her as well. An all around great day for my wonderful girl! Such a darling.

Monday, June 5, 2017

Much improved

Reagan slept fairly well last night. I did have to get up and pat her back to sleep a few times early on, but then she was finally out. She even slept in a bit this morning, not waking up until right around 9:45am. She woke up feeling much improved. Thank God. She was still very sleepy though and ended up dozing back off and sleeping the rest of the morning and not waking back up until around 3pm. She woke up happy. Very vocal and still very gassy. We gave her a much needed bath and she's been feeling pretty spunky tonight. Rolling around a lot and very happy/vocal. A few times tonight she's gotten the crazy laughs and really started carrying on! I definitely think her tummy is still giving her trouble, but she's laughing about it now instead of crying. Sweet girl.

Sunday, June 4, 2017

Miserable girl

Reagan slept well last night and woke up loud and spunky this morning. She seemed a little tense but in a decent enough mood. That mood quickly deteriorated as the day went on. She was very tense and sensitive and by noon she was pretty miserable. Lots of crying, a very sad and miserable sort of cry. She's had lots of stinky gas so I can't help but think it must be tummy pain related. We had to give her pain meds all afternoon and she was only comfortable and able to sleep during the first hour or so after receiving medicine, after that she'd wake up and start fussing/crying again. It was a LONG day. The only relief she got was when she was able to sleep. When awake, she was miserable. When asleep we did our best to not disturb her. Really praying she can somehow sleep through the night and wake up feeling much improved by tomorrow. Poor girl. Breaks our heart to see her like this.

Saturday, June 3, 2017

Gassy but better

It's been a much better day for my girl. She slept well last night and woke up a lot more laid back today. She's been very sweet and calm all day today. Happy to just roll around on the floor and oh so snuggly. She's had lots of super stinky gas today, so something is definitely brewing in that belly. Not a lot going on today. Finished up the cake. We're all dragging a little after our late night, but we it's done and I think it turned out pretty great! Made a quick trip to the farmers market (and Ryan got the coveted balloon animal). Then came home and watched the movie Sing with the kiddos and Grandma. Glad my girl seemed better today. Hoping for another good one tomorrow.

Friday, June 2, 2017


Reagan had a bit of a tense day today. It started off ok. She slept well and woke up in a decent mood. But she was sensitive. Thankfully no therapies, so she was able to just take it easy. Grandma came in today and both kiddos were definitely happy to see her. Today was Ryan's first day out of school so Grandpa came over and went swimming with him. I was busy making a cake for my neighbor's daughter's graduation, so it was nice to have some extra help to keep him entertained. Tonight he and Mike went to a minor league baseball game, while Grandma and I worked on the cake. Reagan's nurse stayed until 10pm so we could continue working on the cake (but truth be told we were up until 2:30am working on it). Reagan continued to get more and more sensitive as the day went on and her nurse had to eventually give her some oxycodone. She was pretty gassy so it's possible it's tummy related. Hoping she can settle down and get a decent night's sleep tonight. Sweet girl.

Thursday, June 1, 2017


It was another early morning for us. Ryan was in our bed by 4 and I was up at 5 to run. Reagan was awake and making noise by the time I got back. She was sweet and smiley so that was a good thing. She's had a pretty good day today. Two therapies and did well with both. A little on the sensitive side...especially with music on tv. Her brother had his pre-k graduation/last day of school today! He was all smiles and had a blast. Of course he opted to come home with me, so that was a short last day of school! Tonight my girl was darling, but a little vocal/antsy. Enjoyed being held, but was grinding her teeth nonstop. Hoping she's not headed the wrong direction!