Wednesday, August 16, 2017

Pretty great

Reagan slept well last night and then woke up this morning cooing and in a good mood. Whew! What a relief! (She had squirmed halfway across the room!) She's been vocal and sweet all day. She did have a little brief period this morning where she looked like she was getting upset, but she pulled through and has actually been pretty great all day. She's taken several little cat naps today...enough to miss all of her scheduled therapies! She knows what she's doing. She's also had tons of gas and two huge poos today, so I'm sure that has to be a relief to her little tummy. Hoping she can continue to have good days. Would love to get in some therapies tomorrow and Friday as she's already missed two days of therapy this week!

Tuesday, August 15, 2017

Asleep then miserable

Reagan slept the entire day today. Slept like a rock last night and continued sleeping hard all day. Her nurse gave her medicines, checked her vitals, and changed diapers without waking her even once! She joked that I we could put a marching band in her room and that wouldn't even wake her up! All of that came to a screeching halt around 5:30pm when her nurse attempted one last diaper change. Reagan woke up crying and would NOT settle down. Mike had mentioned that she was very limp last night when he took her to bed, which is sometimes a sign for impending bad days. God I hope not. She was pretty miserable though. Her nurse gave her medicine but she didn't stop crying until I held her. And wouldn't stay asleep unless I was holding her. Eventually she woke back up and was miserable and crying once more. This time I gave her clonidine (her normal nighttime sleep medicine) and it worked. She fell asleep and I was able to get her comfortable on her mat on the floor. I carefully gave her the rest of her medicines and didn't even attempt a diaper change before bed. Praying she can stay asleep and wake up feeling better in the am. Poor sweet girl. Slept all day to wake up miserable. No fun.

Monday, August 14, 2017

Great day, gaggy night

Reagan had a great day today. She's been in a good mood and sweet and smiley all day. She had a busy day of therapies and did awesome with all of them. She had speech, PT, and then school and was a rock star for everything. Really great day for therapy. She's been full of laughs and smiles all day. Then this afternoon she's gotten very spitty/gaggy out of no where. She's not low tone like she normally is when she gets spitty, so I'm wondering if her tummy is bothering her. I hooked her up to a drain tonight and drained a good amount of fluid and air out of her tummy. Hopefully that helps. Praying she can get some sleep tonight and sleep off this nausea.

Sunday, August 13, 2017

Tense morning, but better by afternoon

It's been an interesting day today. Reagan was restless last night and making lots of noise, but she was content enough to just lay in bed and was dozing off and on.  I got up early to run but everyone was up and at em by the time I got home. Reagan had been crying and still had tears all over her face. She was very much on edge all morning and I was worried we were in for a full on bad day. Thankfully, she proved us wrong. She turned things around and actually had a pretty good day. She was slightly sensitive (especially in the morning), but really loosened up as the day went on. Tonight she was squirmy and sweet. Not getting sleepy, but still super precious! Hoping for a great day tomorrow for my girl!

Friday, August 11, 2017

Good girl, good day

Reagan had a good day today. She slept well and woke up super sweet and smiley. She's been pretty adorable all day today. Very smiley. Very sweet. A little easily excitable with certain things (the ipad), but overall very good. She had PT this morning with her new PT (her other PT is on early maternity leave) and was great for that. Then the rest of the day she took it easy with her nurse. Tonight she's been darling. Very talkative. A little handsy on her tube, but overall pretty precious. Hoping for a good weekend for my girl!

Thursday, August 10, 2017

Still precious

Reagan had a good day today. She's been smiley and precious again. So glad she turned things around. We weren't really sure where she was headed yesterday. No therapies as her OT is still out of town and her PT is starting maternity leave and we're transitioning to a new PT on different days.

Wednesday, August 9, 2017

Calm, sensitive, sleepy, tears, and smiles!

Reagan slept well last night and woke up this morning super precious and wide eyed. I was sooooo relieved to see that she woke up calm and content! She had speech this morning and did pretty well. She was a bit sensitive so they kept it low key. She worked on yes/no responses and using the eye gaze on the computer. She had a great morning and then got sleepy again this afternoon. She took a nice long nap but then woke up crying, but thankfully her nurse was able to get her back to sleep pretty easily. She slept til around 7pm. She woke up wide eyed and precious. A little dry mouthed but I gave her some swabs of water and I think that helped. She's been super smiley and precious all night. Huge ear to ear smiles. Just wonderful, this girl.