Reagan had a GREAT day today! She's been super precious again. Very calm and laid back. Just so content. She had speech this morning...the only therapist working today on Memorial Day. She did great with that and she was talking about how well she's doing answering questions with it! This afternoon we had some serious weather move in and it was POURING! The tornado sirens even started going off. We were watching a lot of news and eventually moved everyone downstairs close to the pantry (the only room in the center of the house and under the stairs)! Thankfully we didn't have to seek shelter, because Ryan would have definitely driven us all crazy in that confined space (he's got a runny nose and bit of a cough today so I'm wondering if maybe he's getting sick)! Reagan was super laid back through everything! So glad to see her so relaxed and calm. Tonight she was kicking around a little more than this morning, but she was still super relaxed. Lots of cuddling again tonight and she dozed off on my lap around 11:30pm with the help of clonidine. Love this girl!
Monday, May 25, 2015
Sunday, May 24, 2015
Reagan slept well last night and woke up this morning PRECIOUS!! She has been such a darling girl today. SO darling. A little vocal this morning, but good vocal. Around 1pm her new weekend nurse notified me that she had just thrown up! We immediately told her she could go home...no need to risk exposure to another stomach virus! (That last one was horrendous!) So my girl spent the rest of the day just hanging out with us! My Dad and step mother came over this afternoon. They cut their biking trip short (they were supposed to be gone through mid June). My Dad had gotten heat stroke on his second day of riding and was never able to fully recover riding 60+ miles per day! It's too bad they didn't get to make it all the way to Maine (they were riding their bikes from Florida to Maine...yes, they're a bit crazy), but I'm happy they're back! Ryan was ecstatic to see his Grandpa (and not at all happy when he left)! Lots of rain here. Lots. It's crazy. You'd think we moved to Seattle instead of Austin! Reagan was SO tolerant of everything...the loud tv, her crazy brother, us talking! Super laid back today. Love days like today. Tonight I held her for hours...she was so cuddly and sweet! Love this girl!! She, however, was NOT going to sleep on her own. Finally at midnight Mike laid down with her but she still wouldn't doze off. I gave her clonidine around 12:30am and she fell asleep around 1am. Sleep little princess, sleep!
|My view tonight...staring into the eyes of this princess! :)|
Saturday, May 23, 2015
Reagan slept well again last night. She moved around a lot more in her sleep, but she still seemed to be sleeping pretty soundly. She slept in again and woke up with a wet bed. She was calm and content though. Still serious, but wide eyed and precious. She was pretty groggy most of the morning, but was really fighting sleep. She did finally have that big blowout she was threatening us with yesterday! Thankfully it was all fairly easily contained (just added to my laundry load)! She just took it easy all day. She was very laid back and we only heard a few peeps out of her all day. Tonight she dozed off on her own again. Such a precious girl.
Friday, May 22, 2015
Reagan slept like a rock last night! Seriously, we don't think she moved all night long. She slept in this morning and didn't wake up til 9:30am. She was very serious (the smiles were long gone), but she was calm. PT came at 11 and worked with her. They got her up into her stander only to hear something that sounded like a major blowout! They immediately got her down only to find out it was a false alarm! Silly girl! At least she got that out! This afternoon she took a nice long nap. She woke up and was very cool and calm (even her brother's craziness didn't other her). Then tonight she dozed back off on her own early...hoping she sleeps well and wakes up happy tomorrow.
Thursday, May 21, 2015
Reagan woke up this morning with a giant wet diaper. She had soaked through her clothes and her sheets...pretty much everything was wet (and it was the stinky pee, so that's an added bonus)! Not sure how well she slept with all of that. Needless to say, we decided to just throw her in the tub first thing. She was all cleaned up in no time! Thankfully she was super calm and smiley, so she didn't seem to care in the least! She was very laid back today. So sweet! The sweetest little smile EVER! She ended up dozing off again around 11:30am and then slept til 3:30pm. Just long enough to miss both OT and school/vision! Sneaky little girl! She was awake the rest of the afternoon and tonight until her nurse left. When we went upstairs to get her, she was out like a light! I missed my snuggle opportunity, but so glad to see her falling asleep on her own. Hoping she finally gets a solid night's sleep tonight!
Wednesday, May 20, 2015
Reagan was a bit restless again last night but I do think she slept some. She's had a good day today. Quite a few therapies, so she stayed busy. Her speech therapist is out with strep (second therapist in two weeks), so no speech today, but plenty of other things. Her PT came at 11 and worked with her, mainly on sitting and kneeling. Then OT came at 1 and she got some more good body work. Then at 3:30 her teacher and speech therapist from school came! It was a busy day, but there was enough time between each therapy to give her a little break! All in all, it was a good day. She was super sweet and calm and just an all around good girl!
Tuesday, May 19, 2015
I'm not sure how much Reagan slept last night, she was asleep when Mike put her to bed (her eyes were closed but she was still restless and putting her hands in her mouth)! But she stayed in bed and she was quiet (so we slept)! This morning at 5:45am when I got up to run, I found her sideways in her bed all tangled up in her tube! Thank goodness she didn't pull it out or pull it around her neck! She's been a sweet girl again today. No therapies...she had an afternoon cardiology appt that interfered with everything so we had to reschedule OT and school. We were able to get a bath in this morning, so that was good. Then this afternoon, we picked Ryan up from school at 1:45pm and headed into town for her appt. Her last cardiology appt was in Houston in 2011...so this has been a little overdue. They did both an EKG and an echo (which lasted longer than any of us anticipated...Ryan was getting very impatient)! Thankfully everything came back perfect and her heart looks good! Thank you God! So we're just going to follow up with cardiology once a year just to keep an eye and make sure she doesn't develop any sort of cardiomyopathy that sometimes happens in kids with mito. Thankfully it was an uneventful appointment! The rest of the afternoon/night was pretty laid back. My girl was definitely fighting sleep! She dozed off in my arms for a bit but was very jumpy the whole time. Then she got a second wind and we eventually had to try clonidine. For now, she's in her bed, but she jolted awake when I adjusted her tube. Hoping she can get some rest tonight!