Thursday, September 7, 2017

Getting there...

Reagan slept last night, in her chair, but she slept. She woke up this morning and was still very stressed. She'd fall asleep and then wake up crying off and on. Thankfully she was able to sleep on her own and tonight she finally woke up and seemed to be much improved. She was calm, still serious, but OK. Grandma and I were able to give her a much needed bath and I think she had to feel better after that. As of now, she's asleep in her own bed. I hope it stays that way. Praying my girl will wake up feeling much improved tomorrow.

Wednesday, September 6, 2017

Not again

Reagan slept well last night, albeit in her chair, but we were thankful for sleep nonetheless. She woke up very tense and serious. She eventually seemed to calm down a little and then dozed off and fell back to sleep. When she woke...she was a completely different child. Screaming, crying, biting; she was miserable. She definitely seems to have taken a turn for the worse. It would now seem she's having a full on bad day (hence the bad day smell we've been smelling). On a good note, the pain medications seem to be helping her and she's been able to sleep some of the bad away. Really hoping a switch flips soon and she can get back to her smiling self. Please keep praying for my girl.

Tuesday, September 5, 2017


So yesterday afternoon we noticed a bit of gagging from my girl. I was just hoping it would be short lived and it seemed to be self inflicted from her shoving her hands down her throat, but apparently it's more than that. She was quite gaggy last night and very restless. Mike couldn't get her to fall asleep in her bed and eventually had to move her to her chair, because we couldn't leave her awake and gaggy in her bed. She was just NOT falling asleep. Very vocal, very active. And there she sat. Awake the entire night. I don't think she ever dozed off once. And she was awake all day today too. She was still nauseous, but thankfully she was in good spirits. She had PT, OT, and school and did surprisingly well for all of them, all things considered. PT and OT were able to get in a lot of stretching, which was good because she's been so tense. She has a distinct bad day smell about her. It's her breath. This weird acidic (almost smells like blood) smell. Mike and I both recognize it all too well. There's also lots of tooth grinding and a very serious face, but every now and then she'll still give us a laugh. Poor girl. She just looks SO tired. And then the retching/gagging. It's so hard to watch. Tonight I'm switching her over to pedialyte. Not sure if it will actually help, but at least it will give her GI system a rest. Hoping and PRAYING my girl can get some sleep tonight. Please keep her in your prayers!

Monday, September 4, 2017


My girl is still kooky! And still hanging in there. She was up a lot last night. Very vocal and squirmy. I had to move her back under her covers more than once. I do think she went back to sleep though...even if just for a little bit. She's continued to be active and vocal today, going at that hand a lot and pulling at her face. We did have a nurse today and she tried her best to keep those hand out of her mouth. Reagan took a little nap around lunch time and woke up considerably more tense. We gave her a bath and that seemed to help a little, and she's been fine the rest of the night. Still super squirmy (and vocal) but good. Hoping she can settle down and get some sleep tonight. Last night wasn't the best night's sleep for any of us (well except Ryan, he stayed put so that was good). We've got a busy 2nd week of school so hopefully she stays happy!

Sunday, September 3, 2017


Today was very similar to yesterday for my girl. She was vocal and a little kooky, but OK. We even went on a little road trip to Mike's sister's house, who lives a little over an hour away. We did go ahead and put her noise cancelling headphones on when we put her in the car, because she immediately got a little kooky/vocal. It was a long drive but both kiddos did well. We kept those headphones on the entire time at his sister's and she did fine. A little kooky but fine. Ryan had a blast playing with his cousins and petting baby chickens. Mike got to visit with his sisters and parents. Good times. We got home just as it was getting dark, just in time to do medicines and get everyone ready for bed. Got a long run in the morning so hopefully everyone behaves and we can all get some sleep tonight.

Saturday, September 2, 2017

Easy going Saturday

Everyone slept much better last night. A big part of that was that Mr Ryan stayed put in his bed until morning. We were all pretty exhausted last night, so I had my fingers crossed. We've had an easy going Saturday. A lot of just laying around. Reagan has been pretty laid back for the most part. Still super sensitive to talking (mainly me talking)...we've had tears a few times, but she quickly recovers. Other than that she's been great today. Talkative and happy. Still chewing on that hand. I had to take it away from her this afternoon when I noticed it was completely discolored and shriveled up beyond recognition! This girl. Hoping she hangs in there and continues to have a good labor day weekend!

Friday, September 1, 2017

Me and my girl

Just me and my girl today. Thankfully she has been wonderful today. I'm actually kinda glad that she and I got to spend this time together. It's amazing how much better of a nurse I am when I am able to give her my undivided attention (with brother in school). She's been super precious today. Very sweet and smiley. Not a fan of me talking to anyone other than her though. I had to be careful with that because we almost had tears a few times when I was talking to Grandpa and our neighbor! Other than that she's been pretty laid back today. Happy to just roll around on the floor (chewing on that hand). Finally tonight I had to put it in a restraint to try to give those fingers a break. She's relentless. Hoping for a good weekend for my girl!

Looking super laid back after her bath this morning!

Now, that's more like it! Spunky girl...