Friday, May 27, 2016
My girl slept well again last night and even slept in a little this morning. She might have kept sleeping, but her nurse had to change her because she had leaked. Thankfully, she woke up happy and has been great all day long. She had speech this morning and she ate! She's really loving tasting and she's doing a pretty good job at putting it away. Then this afternoon she had a make up PT session, where she did great sitting although still a little loosey goosey, followed by a bath. She's been good all day although tonight she did seem to have some slight sensitivity to us talking. I hope that's not a bad sign. Really hoping for a good three day (nurseless) weekend for us or it's gonna be a loooong one!
Thursday, May 26, 2016
Reagan slept well again last night and woke up this morning super sweet. She was very calm and relaxed but sensitive in her eyes (she kept flinching and closing her eyes). She had both PT and school today and did well with both. She's been very relaxed and precious all day. Tonight she was on her best behavior while I went to bunko. After I got home, we snuggled and she fell asleep in my arms. Sweetest girl ever!
Showing support for a friend from high school finishing the last of her chemo tonight!!! So happy for her and her family!
Wednesday, May 25, 2016
We are SO happy that my girl not only slept the night through, but she woke up this morning feeling much improved!!! Whew! Thank God. Not a lot going on today...just one therapy speech this morning which she actually did pretty well with. Then this afternoon her teacher came. Again, considering the day she had yesterday, she did surprisingly well with everything. So glad she turned the corner so quickly. Hopefully the rest of this week is good and calm.
Hair dried a little wavy today! ;)
Grandpa kept catching them and throwing them back at Ryan!
Tuesday, May 24, 2016
So...today was what we were worried about. Reagan slept in a little but then woke up NOT happy. Her nurse gave her some oxycodone but it didn't help. It wasn't until an hour and a half later when she tried the clonidine that she finally settled down and fell asleep. She slept for a while and then woke back up around noon upset again. Her nurse was able to calm her and get her back to sleep without medication this time around and then she slept the rest of the afternoon. She woke up around 5pm and was calm albeit a little moany (and burpy). This continued til around 7 when she started escalating a bit, grabbing my hand with a death grip and fussing. I gave her some Lortab and she dozed off and slept the rest of the night. We really weren't sure if we should try to move her or not, but hated the idea of her sleeping all night in her chair, so Mike gambled and moved her to her bed. Thankfully it worked out. She stayed asleep and now we're just hoping she'll get some sleep tonight and wake up feeling better in the morning! Fingers crossed!
Monday, May 23, 2016
Reagan slept well, waking up right around 6:45am. She woke up super sweet and smiley once again. Still lots of kicking around with her legs and hands in her mouth. Still making lots of vocalizations...but still happy ones. It's hard to say what direction she's actually headed. I would tend to think all of this energy will eventually fizz out and she'll have some sleepy days...but not yet. Or the increased tension and tone could be leading up to bad days. Lets hope it's the former and not the latter! Ryan had a routine dentist appt this morning that did not go so well. He immediately remembered where we were and though he loves the waiting room, he did NOT want to go back. We managed to distract him though, but getting him to open his mouth for the dentist was another thing. Ugh. It's crazy, because he has no problems with me looking in his mouth and brushing his teeth (and he'll even brush his own) but definitely not a fan of the dentist. Maybe he remembers having that cavity filled a year or so ago and we had to strap him down? This kid has a memory like an elephant! He fought like mad...all she did was look in his mouth and then swipe some flouride over his teeth. He loved that. Acted like he was going to throw up afterward. Of course, as soon as we leave, he wants to go back for another toy from their huge stash. No school today, it was a bad weather make up day that they didn't need. We came back home and got Reagan ready for therapy. She's been very attentive so she had a great session with speech this morning. Afterward we gave her a much needed bath! Then this afternoon we loaded up both kids and drove out to a park near the lake. Ryan loved it (he played with a little girl the whole time)...it was a little humid and too mosquitoy for me and Reagan! I got eaten alive. Both kids were good the rest of the night. Reagan spent some time lounging with Grandma before bed. Hoping for a good week for my girl.
Sunday, May 22, 2016
Reagan woke up super vocal around 5am...she was NOT going back to sleep! I changed her and moved her to her chair in the therapy room, but left her tv off. I was hoping maybe she'd go back to sleep. Well I don't think that ever happened, but she did let us sleep! We actually slept until almost 9am! We woke up just as Grandma was walking in the door. Ryan was still in bed, awake, but quiet so even he didn't wake us up! Both kids were super happy to see their Grandma! Reagan has been super spunky again today. Hands in mouth nonstop, lots of movement, lots of tone...but all smiles! Grandma even made a lime jello/coolwhip dessert so Reagan could eat it! She loved it and I think she would've just kept eating it all day if we had let her! Ryan had a blast running around playing hide and go seek with grandma and then chasing her around the block on his bike (of course the second I went out to relieve her, he tipped over and skinned his knee)! Reagan has been so super sweet and talkative today. Tonight I swear she was saying Hi to me! I was saying Hi to her and then she'd say it. Over and over again. Cutest. Thing. Ever!!! Love this girl! The hands in the mouth (crammed in her mouth) are driving me crazy, but she's just so cute and so smiley, you can't help but smile! She has been holding pees a little this afternoon, so hopefully nothing comes from that. Such a sweet girl.
Saturday, May 21, 2016
Reagan had a good day today. She's been super sweet and smiley. Lots of movement, kicking herself all over the floor. Hands in the mouth constantly...usually both of them. Big, huge eyes! Very alert and very spunky! We're nurseless Sat-Mon, so we don't have a lot of plans this weekend. Most of the day we just hung out and took it easy. Tonight we did go over to the park behind my dad's house to see fireflies...for whatever reason there are a ton of them out there but none near our house! Ryan had a blast and didn't want to leave. I'm not sure if Reagan saw them or not, but I'm sure she enjoyed just getting out of the house. Tonight after brother fell asleep, Reagan and I were snuggling and she was grinding her teeth like crazy. It was driving me nuts. I didn't notice her doing it in her chair or on the floor but the second I picked her up, she'd start doing it. Like fingernails on a chalk board! She was not falling asleep on her own (and it was almost midnight), so it was definitely a clonidine night. Hoping we all get a good night's sleep tonight!