Wednesday, October 29, 2014


It's been an awful day for my girl! It all started last night. She was fighting going to sleep and getting more and more aggravated. She flipped out and ended up spending the night in her chair. I don't think she slept much at all. I got up a few times with her when she was upset, but most of the night I think she was just kicking around quietly but awake. She seemed to calm down a bit and there was a period of time this morning we thought she might actually be OK. I picked her up and held her and she was even giving me some laughs! But not long after that, she started crying and then cried nearly the entire day. Her medications were not very helpful today, giving her brief if any relief from the pain. We've had to use her restraints off and on today as well. She's been very bitey and at one point she did get a hold of her right finger (because we were holding her left hand). This is way too soon to be having bad days again already, but I'm just praying it comes and goes as quickly as we've seen the last few cycles. Hopefully she'll get some sleep tonight and wake up feeling much improved tomorrow! She just has to right, because she can't feel much worse! Prayers for our sweet girl are much appreciated!

Tuesday, October 28, 2014

Sweet girl

Reagan slept well last night and woke up around 6:45am. She was sweet and smiley...definitely more happy than previous days. She's been giving us laughs and smiles all day today! She had a busy day of therapy with PT in the morning, followed by vision/speech through the school, and then OT! Busy, busy! She did really well with everything and has just been a super sweet girl nonstop. Still very relaxed in her body. She's been sleepy off an on throughout the day, but never really dozed off. Tonight especially she keeps closing her eyes and then popping back awake with a giggle! Hoping she can doze off for good and get a good night's sleep tonight and give us another good day tomorrow! I'm really hoping she holds out and has a good day for Halloween, but her last couple of cycles have been much shorter so we're definitely on borrowed time! Prayers for my sweet girl to hang on!

Monday, October 27, 2014

Go with the flow Monday

Reagan slept well again last night. Woke up a little early...was awake when I got back from my walk...but she was good. Still a little serious. She had another poo on her own this morning! I know that's a lot of poo talk but hey, we get excited about that around here! It's nice to see her going on her own on a regular basis (3 days in a row). She definitely loosened up a bit as the day went on. All in all, she was pretty calm and content today. Still a little spitty, hands in the mouth a lot. She had speech this morning (was making a lot of choices), OT this afternoon (did some time in the stander), and then school late this afternoon (very visually attentive but still very into her hands). She's been a good girl. Laid back, go with the flow. Not super happy, but content, so that makes us happy.

Sunday, October 26, 2014

Calm but serious

Reagan slept well last night (in her bed) but woke up fairly early this morning. She was calm but serious. Not many smiles today. An occasional laugh if we worked really hard for it. She had a bit of a gurlgly tummy and even had two dirty diapers on her own! As the day went on she got more and more spitty and was even a little chokey at times, but no real nausea to speak of. Tonight she was looking sleepy so I picked her up to try to get her to fall asleep in my arms, but she was getting a little too chokey in that position. She did eventually doze off on her own and Daddy moved her successfully to her bed. Hoping for another good night's sleep for my girl and good day tomorrow!
(We had a really stressful day today with Ryan getting upset at church and then a very uncomfortable meeting with the childcare workers! Not sure what we're going to do with him. He's progressing well speech-wise but just not getting there behavior-wise. He wants to do what he wants to do...all of the time! Please pray that we see some improvement in this area and that we can figure out how to help him best! It's hard not knowing how to deal with such a headstrong child!)

Saturday, October 25, 2014

Sleepy but better

We're so thankful Reagan slept last night and woke up this morning feeling much improved! This morning we found her completely sideways in her chair, but still asleep. When she woke up, she had a scowl on her face and was very serious, but no longer upset or crying! She had a pretty good day today...all things considered. She's been pretty mellow and dozing off and on all day. We'll take that over crying and miserable any day! She dozed off on her own so we're hoping she sleeps well and wakes up feeling even better tomorrow!

Friday, October 24, 2014

Bad day

It was a bad day today. My girl slept well and even slept in a little this morning. But when she woke, she was not happy. She was very tense, whining, and stressed! Unfortunately it just continued to get worse! She started crying and biting and flailing...we couldn't control her. She managed to pull her hand away from her nurse and took a little bite out of her pointer finger. For the rest of the day she had to wear an arm restraint on her left arm...for her safety! The only positive thing, she was responding well to pain medication. We alternated clonidine and Lortab/oxycodone all day and she slept through most of the bad. It wasn't until tonight that she had a longer stretch of misery where she wasn't responding to medication. Finally she dozed off on her own and were just praying she'll sleep well and wake up better tomorrow! Please keep her in your prayers! These bad days are coming way too quickly!

Thursday, October 23, 2014

Smiley spitty girl

Reagan woke me up around 4am this morning. I went in and checked on her, covered her back up, and went back to bed. When I got up at 5:30am, she was back asleep. When I got back from my run, she was awake again (probably due to the dirty diaper she was sporting)! I changed her and moved her to her therapy room and she was all smiles! She's been smiley and wonderful all day again today! Super sweet, but also super spitty! Not at all gaggy (although a little chokey at times), but definitely a steady drip! She had PT and OT today and did great with both. Loving these good days for my girl! Prayers that they continue!