Wednesday, January 28, 2015

Busy day, sleepy night

It's been another calm one! Reagan slept well and was still but awake and smiling when we checked on her this morning. She's had a super busy day of therapies. This morning she was very groggy...she was awake for speech but just barely! Then PT came and woke her up a little with some stretching, but she was still pretty groggy. This afternoon she had private OT and then school & OT! She really did well considering she had so many things crammed into an already groggy sort of day! She did get a little over excited once during school (the Grandma bunny started playing and she started laughing/smiling but once activated it plays for a while and she almost lost it)! She regained her composure though and was fine. She actually was dozing off afterward. Busy day, I don't blame her! She fell asleep in her bean bag chair before her nurse left for the day and then she just kept sleeping! There was one moment, around 9:30pm or so, when she woke up, opened her eyes, acted a little stressed and vocal and then dozed right back off. She didn't even wake up when we moved her to her bed and changed her diaper! Sweet girl! Hoping she gets the rest she needs!

Tuesday, January 27, 2015

Super sweet and calm

Reagan slept well last night and has been super sweet and calm again today. No therapies this morning so that gave her extra time to take it easy. This afternoon she had both OT and school/vision. She did well with both, but she was pretty groggy. After school we decided to seize the day and give her a Jamberry pedicure since she was so calm and still! It's not easy with those tiny little toe nails, but we got the job done and it looks SUPER cute! Tonight Reagan was so super cuddly and sweet...loving these laid back easy going days for my girl!
Glitter hearts (Jamberry "young love")

Monday, January 26, 2015


Everyone slept in this morning...well, everyone except Daddy! We all got up a little after 8. Reagan was laying in her bed, completely still, arms up above her head, but eyes wide open! And that's how she's been all day. Very laid back and calm. Not a lot of movement. Arms down by her side and only in her mouth on occasion (instead of nonstop). Very still. Very chill, but sweet. A little spitty and doing some licky mouth movements, but I think that may be related to the decreased tone. She had speech this morning and despite wanting to doze off when she got here, she did really well making choices! PT came shortly thereafter and Reagan was still pretty groggy and wanting to doze off. Her therapist was able to get in some good stretching though, so that's good. The rest of the day we just hung out. No nurse today so she spent a lot of time around crazy brother but didn't seem to mind.
Totally relaxed!

Notice the trail of creamer from the floor to the tv! 

This boy has an obsession with creamer,
it's all up his nose and in his eye! 

Sunday, January 25, 2015

Time for new pics

It's been another good day for my girl. She's been sweet and relaxed all day. Definitely less serious and more easy going. We're getting more laughs out of her which is great. Another take it easy sort of day. I really want to get some pictures taken of her and her brother again. We had some done when we first moved here a year and a half ago, but haven't had any since. I've found a local photographer I want to try, I just need to call her up and try to set up a session. Would love to do it around their birthdays in March! Here's a link to the video from Reagan's Tiny Sparrow Foundation shoot 2.5yrs ago. I just showed this to her nurse the other day for the first time. It's such a beautiful video (if you watch it, make sure you can hear the music, such a neat song as well)...I forgot to mention, the video doesn't come up when I pull it up on my iPhone, just my laptop!

Saturday, January 24, 2015


Reagan had a good day today. So happy for a quick recovery for my girl. She's still been pretty serious, but content. We've gotten a few smiles/laughs out of her but we had to work really hard. Still no weekend nurse, but thanks to Grandma, we did get a lot of cleaning and organization done in Reagan's therapy room! Actually in every room...even her closet looks 1000 times better (it's hard to stay organized when you have so many cute outfits)! Christmas is finally down and put away, so sad, but at least it's done. Tonight Grandma and I even got out to watch Into the Woods! Daddy watched the kids and we went to a showing at Alamo Drafthouse! Loved it. My mom and I saw the musical years ago and we loved the movie version even more! Definitely something I'd like to buy and watch over and over again! I'll leave you with more pictures of Ryan and the tent he got for Christmas from Zoey's mom Heather! He LOVES it and his new thing is forcing as many people into it at one time! He grabs a hold of your arm or leg and then leads you over to it. He's climbed in with Daddy, Grandma, Mommy, Mommy and Grandma, Mommy and get the picture (and even though it's definitely not big enough for two adults, we humor him)! But once you're in, he doesn't want to let you out!

Friday, January 23, 2015

Quick recovery

Reagan had a pretty good day today...all things considered. She slept well in her chair last night, but when Mike woke up for work, he heard her pump beeping. Apparently, it had been beeping all night long (and we just never heard it), because there was still a full bag of formula. He got it running again and then laid her in bed where she slept for another couple of hours. When she woke up, she was wide eyed and serious, but not upset anymore. She was very tense today, but OK. She even tolerated a session of speech! Most of the day we just kept it calm and quiet and let her recover from yesterday's drama. Hoping she sleeps well tonight and wakes up feeling even better tomorrow!

Thursday, January 22, 2015

Not a good day

Today was NOT a good day. Reagan slept last night but woke up very tense and stressed this morning. It was only a matter of time and she was full blown crying! She was bitey and we had to keep her arm restraints on her most of the day. When she was awake (in the morning and early afternoon), she was crying! Thankfully her medication was and we were at least able to get her to fall back to sleep and sleep off the bad. This afternoon she had a longer period of being awake without crying, but she was extremely tense. We held off on giving her any meds for a while but when we did finally try clonidine, it didn't work. Two hours or so later, she finally dozed off on her own and we left her in her chair for the night. Hoping my girl wakes up feeling much improved tomorrow because it was a rough one today!