Thursday, June 30, 2016

Smiley and sweet

Reagan slept well last night...actually we all slept like rocks last night! My girl has been super smiley and sweet again today. She had PT this morning and she had her session in the pool. It was a little sunny but she toughed it out! Speaking of tough...trying to get this girl to bear any weight through her legs! She really wanted to keep them bent and pulled in to her tummy the whole time she was in the pool. Her therapist got her to relax a few times and straighten them out, but in general she kept them pulled in. Of course, her crazy daredevil brother jumping in and constantly splashing her probably didn't help! She was worn out after her swim and did doze off for a bit, but woke back up shortly thereafter. She's been super sweet and smiley today but her body is pretty tense and she's been grinding her teeth A LOT (especially this afternoon/tonight). As tense as she was, I was surprised to see her doze off on the floor by herself. Hoping for another good night's sleep tonight for everyone and another good day tomorrow for my girl!






Wednesday, June 29, 2016

Super precious

Reagan had another good day today! Sleep was better, although she was up a bit early. But she sure has been precious all day! Very smiley. Very calm. Only one therapy today...speech. She worked on feeding and seemed to enjoy that. The rest of the day she took it easy. Watched Zootopia. She was super snuggly and cuddly...I got lots of cuddles in tonight. Love this girl. If she's good tomorrow, we're going to try doing PT in the pool!!



Tuesday, June 28, 2016

Excitable but good

Reagan had a bit of a rough night last night. She fell asleep in my arms so peacefully (with the help of clonidine), but then had a major clonidine freakout when Mike tried to move her to her bed! Eventually a dose of Lortab seemed to counteract the negative effects of the clonidine and she finally went to sleep around 1am. Unfortunately that didn't last long, she was back awake at 3am! I was able to get her back to sleep but by 5am she was back up and this time for good. Thankfully, she was in a good mood, a little vocal but good. This morning maybe 15min before her nurse arrived, she did have another "episode" similar to yesterday. She again was very sensitive in her eyes and started the blinking (this time not lasting nearly as long) but then that transitioned into the wide mouthed yelling out maybe two times and then the head turn and then fixed to the left. She snapped back to it very quickly though and her head wasn't turned/fixed for long. Still not sure what triggered it, but definitely seems related to the sensitivity in her eyes. Despite that little hiccup, she actually had a really good day today...a little kooky/excitable but good. She had PT this morning and did well for that. She spent some time in her stander, but she is having some issues with one of her AFOs (that's causing a pressure point that now appears to be bruising), so we're going to have to sort that out with the orthotic place before wearing them again. This afternoon she had school and did well for that despite being a little excitable and distracted by the torrential downpour outside (that I had to drive through to go pick up Ryan)! She was good tonight...hoping we all get a better night's sleep tonight!

Monday, June 27, 2016

Sleepy and sensitive

Reagan slept well last night and woke up this morning sweet, but a little sensitive. Her eyes were very sensitive and while I was sitting next to her she went into this blinking fit where she must've blinked 50+ times. Definitely seemed a bit seizure-ish, but nothing seemed to trigger it and she didn't do anything else that was questionable so no clue. She had speech this morning and did well with that but seemed a bit sleepy. Shortly thereafter, she dozed off and then proceeded to sleep the entire day! She did wake up for one minute or so midday and was a little startled and even teary eyed, but she dozed right back off. She woke up tonight right at 6pm as the nurse was leaving. She was a little serious but calm the rest of the night. Hoping for a little more awake time tomorrow!!

Sunday, June 26, 2016

First swim of the season

Reagan had a good day today. She slept well again last night and woke up this morning super calm and still. A little serious at first, but she perked right up when Grandma got here. She even got a few laughs out of her! She was pretty chill all day. A little light sensitive, but overall very calm. Tonight we finally decided to take the plunge and get her into the pool. I was afraid of going while the sun was still out because she has been light sensitive, so we waited until around 8pm when there was no direct sun on the pool. Unfortunately, that meant the water was a little cool for my girl. Lots of goose bumps on this swim! She was good though and tolerated it well. Even her brother's crazy antics!!








Saturday, June 25, 2016

Still serious and sleepy

Reagan slept well last night and then just kept sleeping today. Awesome-sauce! She didn't wake up until 11:15am and that was probably partially my fault (going in and giving her medicines). She woke up very wide eyed and serious but calm. I was definitely expecting the worst, but was pleasantly surprised! She's actually been pretty good today. Serious for the most part. She took a nice nap this afternoon at the same time as her brother (I really should have taken that opportunity to sleep myself)! She has been really burpy today. I had her laying down at one point and she sounded like she might actually throw up! I've kept her upright ever since. She's also having quite a bit of gas and vocalizing a little, so I think it's definitely causing a little discomfort. Sweet girl. Really hoping for a good day tomorrow. Grandma is driving in tomorrow morning. She dozed off early tonight, so fingers crossed for another good night's sleep!




Friday, June 24, 2016

Serious and sleep at last!

Reagan FINALLY SLEPT last night!!! Woo hoo!!! Do I sound happy?? I am! Finally, we all got a good night's sleep! Reagan woke up around 9:15am and she was serious. Thankfully, she was just serious and not fussy. I was worried. She was awake just in time for speech at 10. Not sure how well that went, all things considered. That was her only therapy today. She did have a Drs appt this afternoon to get some moles checked at the dermatologist. She has one on her hip that's been there for a while and it has grown, but she's also grown so there's that. She also has one on her back that we had them measure as well. We'll just go back in 6mos and check them again. If they continue to grow, eventually they may want to do a biopsy, but for now we'll just keep an eye on them. She did fine with the appt but was a little sensitive to the wind/sun outside. She was fine once we got home and just took it easy all afternoon. Tonight she even tolerated being downstairs, even though her brother has a terrible cough. Hoping it's just allergies and he doesn't pass it on to everyone else!



Thursday, June 23, 2016

Sweaty but spunky

Reagan was up A LOT again last night. Vocal and moving a ton...it made it hard for anyone to sleep.  It was a rough one. I was so exhausted, I even canceled my run! Of course my girl has been full of spunk and energy again today! She had PT this morning and did a great job! See the super cute standing pics below. She's been good today, but just a little off. Still tons of movement. She's having definite temperature regulation issues, cold feet and super sweaty back. Tonight I let her roll around on the floor a lot to try to keep her from getting too sweaty. No more scary episodes like last night but I was super nervous about it. I've got my fingers crossed that tonight is the night for sleep! She's down at 10 and I'm determined to be in bed by 11! We have all got to catch up on our sleep! Come on Reagan...we're counting on you!




Wednesday, June 22, 2016

Sleep deprived

Reagan did not sleep much again last night. She woke around 2am fussing and I was afraid she had taken a turn for the worse. There was a lot of thrashing and flailing back and forth, but she really didn't even have her eyes open. I gave her some Lortab and with a lot of patting and consoling, she eventually fell back to sleep. She woke back up around 4am and was up. I changed her and moved her to her chair. I don't think she ever went back to sleep. She's still having lots of movement today. Lots of kicking and putting her hands in her mouth. Super smiley and happy. Very rolly. Flipping over onto her side and then onto her tummy (and getting stuck)! Super spunky and vocal. She had speech this morning and did surprisingly well considering how active she was. After speech we had an appt with the Comprehensive Care Clinic. They provide complete care for complex kiddos like Reagan. From pediatrician, to nurses, to nurse case manager, to child life specialist, to dietician, to family liaison, to psychiatrists...they've got you covered. For the time being, we are still planning on keeping our regular pediatrician, but they can really do it all. A one stop shop if you will. Reagan was good the whole way there, but did get a little crazy when we tried to go and eat lunch before the appt (the music set her off). We sat outside and she was fine. She was great for the appt. A little kicky and kooky at times, but good. She had school as soon as we got back and did very well. She's been pretty high energy tonight (and grinding her teeth)...not sure how we're going to get her to wind down and go to sleep. Getting desperate here. She did have one strange seizure like episode tonight around 9pm. She was on the floor and I went over to pick her up and I'm not sure if I startled her or what, but she started yelling out over and over again and her head was fixed to the left. This lasted several minutes before she finally snapped out of it. Not a fan. Really hoping that's the last we see of that! This growing girl...giving us all a scare.

Tuesday, June 21, 2016

Little bit kooky but good

Reagan woke up around 2am this morning and she’s been up ever since. Super vocal and a little kooky at times, but happy. We had a new nurse orienting today and that went really well. We’ve been needing additional nursing for a long time now as we’ve had open shifts not getting filled, but we also now have our dear Megan who has been with us for 3yrs leaving us in the fall (to have a baby)!! We are going to miss her and we’re just really trying to stay on top of the nursing agency to make sure they find new nurses before Megan decides to stop working. Reagan had PT and OT today and did well with both. During OT we had the DME rep come out and spoke with her about a new wheelchair (she’s at the end of the growth of her current one) and a new carseat and bath chair. We haven’t been using an actual carseat in the car since they are all just too bulky to fit in our current car situation and the one we have does not provide enough support for her. We’re going to try to get a new car in the fall that has captain’s chairs, so we’re hoping that will help a lot in making everyone a little more comfortable. We’re looking at the Ricaro Monza car seat that swivels. That would really help us when trying to get her into the car (until we pursue the transfer seat we would love to have installed). We can also tilt the carseat with a wedge so that she can recline a little and it comes with a neat foam table that would really help in her positioning. Reagan has been good all day but still very kicky and into her hand. I'm hoping she's going to settle down and get some good sleep tonight, but it's not looking good. 


Monday, June 20, 2016

Vocal and sweet

Not sure how well my girl slept last night. Apparently I forgot to switch over her monitor from the therapy room over to her bedroom, so I never heard when she actually woke up. What I do know is that Mike went in to check on her at 6:45am and found her wide awake and super vocal! And super happy! She’s had a really good day today. She had speech this morning and OT this afternoon and she did awesome with both! She’s been really sweet and adorable today. I’ve noticed a little congestion tonight, seemingly out of no where, but hopefully that will clear up. I got in some great snuggles before bedtime and she’s snoozing as we speak, so hopefully that means she’ll have a good night sleep tonight! 

Sunday, June 19, 2016

Better day...Father's Day

Reagan woke up around 2am last night, a little moany, but not too bad. I moved her to her chair and went back to sleep. I think she went back to sleep too and when she woke up, her mood was much improved. Today was a much better day for my girl. We had a nurse today so we were able to keep her upstairs and keep things low key. She wasn't super happy, but she was calm. I'll take it. This morning Mike and my Dad went to play some Father's day golf and I hung out with the kids. Then this afternoon we went with my Dad and my stepmother to lunch/dinner. Ryan was a turkey, he kept climbing all over the booth! Reagan was great tonight...she definitely seems to be heading the right direction! So glad she's feeling better!







Saturday, June 18, 2016

Ugh...bad day!

Soooooo...Mike was right. Reagan woke up this morning crying and it has NOT been a good day for my girl! Thankfully she has been able to sleep a lot. I wasn't sure about leaving but I had a palliative care parents forum to go to (to help share our experiences and give them ideas of where they need improvement) and she was sleeping, so I decided to make a run for it. Of course she did wake up while I was gone, but a little pain medicine and she was back out. She was awake and asleep off and on today until she finally dozed off for good tonight. Mike was able to successfully move her to her bed. Praying she can sleep this off and wake up feeling better in the morning!

Friday, June 17, 2016

Super sweet, calm girl

Reagan woke up this morning super loose and sweet again. She's had a very laid back and calm sort of day. No therapies today. Just taking it easy. She's been super adorable and relaxed today. Tonight I did notice a little bit of sensitivity when we would talk though. And a little kooky laughy at times. Mike still thinks she might be headed downhill, I'm really hoping not. More into her hand tonight and wiping at that nose. I snapped a few pics of my girl tonight before bedtime...so cute in her butterfly pjs!




Thursday, June 16, 2016

Loosey goosey (& GI appt)

Reagan slept well last night and woke up this morning a sweet girl. She's been very loosey goosey today. Very still and calm. Pretty precious. She had an early session of PT this morning. She apparently everything loosened up a bit because once in her stander, she decided to have a big poo! Thankfully we were able to salvage her outfit! After PT, we headed to Dell for a GI appt. It's been almost a year since we've seen GI. Thankfully things have been going well, we haven't really had any urgent need to consult with them. We did discuss the ongoing constipation issues and he suggested maybe trying administration of an enema every other day. We'll see. First we have to find a pharmacy that actually carries it! We also discussed increasing her rate up to 80mls/hr (she currently gets 70ml/hr) and possibly taking her off nexium at some point because of all of the negative side effects. Again, we'll see. It'll probably be a while before we try our hand at either of those things. After her doctors appt, we came home and she had OT. She was a good girl for that as well. I wish I could say the same for her brother. After a not so good week at camp, they called me today to actually come get him (and he won't be going back tomorrow). Just too many kids and too few/inexperienced people watching them. Not happy. Reagan was super loosey goosey and snuggly tonight. Mike thinks that means she might be headed toward bad days...I told him to bite his tongue!




Wednesday, June 15, 2016

Still so sleepy

Reagan slept in this morning waking up right around 9:30am...just in time for speech. She was a bit serious and had just woken up, so it wasn't the most productive session, but she tolerated it. She fell asleep shortly thereafter and then continued to sleep nearly the entire day again! She woke up at 4:30pm and she was good. Totally cool and calm. We gave her a bath and she stayed awake! She was super sweet and even a little vocal. Really hoping this means she's skipped over the bad day and she's going to give us some good days now! She kept yawning and quickly fell asleep as soon as I picked her up (9:30pm). Both kids asleep and in bed by 10...soooooo nice!

Tuesday, June 14, 2016

Sooooo sleepy (and serious)

Reagan woke up this morning around 8:30am and was pretty serious/tense. She was awake until right around 10am when she dozed off and then she was OUT. She slept the entire day! Her PT came at 11 and got in a really good stretching session and Reagan never batted her eyes. We canceled OT and just let her sleep. She snoozed and snoozed until 5:30pm when she woke up with wide, startled eyes and a scowl on her face. She was very serious and had a permanent furrow to her brow. I thought she was going to doze back off, so I walked out of the room for a bit, but she got a second wind and started kicking up a storm again. Mike brought her downstairs and held her for a bit and the next thing you know, she was out cold again. Snoring even! Sweet girl. I love to see her able to relax and sleep soundly like this. Hoping she sleeps well tonight and wakes up feeling better in the morning.


Monday, June 13, 2016

Lots o poos

Reagan had another pretty good day today. She slept a little better last night and woke up this morning with a poo diaper. Little did we know that this would be the theme for today. Not the best impression on our new nurse! She was good though and did really well with speech, her only therapy for the day. She was still super into her hand today and very kicky/rolly. Her nose continues to give her trouble...she's had quite a bit of drainage and she's still pretty congested. I would say that I've seen just a few indications that she may be headed the wrong direction. Just a little more tense at times and a little more bitey with her hands. Hopefully it's nothing. She had another two poos on her own during the day, so we did decide to get her back in the bath tub! We got her all cleaned up and cozy and yes she did have one last poo before bed! When it rains, it pours over here! Tonight I finally put her arm restraint on just to give her a break from at least one of her hands. She was super sweet and well behaved though and later fell asleep in my arms without any medicine. Hoping she can sleep well tonight now that she has an empty tummy/intestine!




Sunday, June 12, 2016

Roll with the wind

Reagan was up early this morning, actually I heard her kicking around when I got up to go run, so I decided today would be the day! We would run the "Roll with the Wind" virtual 10k! My running partner and I took turns pushing and we got it done! Reagan was perfect and seemed to really enjoy it! It was pretty hot and humid and I was just glad to finish! We got home just in time for me to take a shower before the new nurse and the yard guys got here. I spent all morning and early afternoon outside pulling weeds and supervising the yard overhaul. Then this afternoon we attended a pool party for our Bible study. We got home just in time to relieve our nurse. We were all pooped. Ryan dozed off shortly thereafter. Tomorrow is his first day of camp.