Friday, February 10, 2017

Smiley and sweet

Reagan was up making noise a lot last night. Mike heard her and said he wasn't sure how much (if any) sleep she got! I moved her to her chair around 6:30am. She was super vocal and super smiley! She's been a sweet girl all day today. A little kookypotimus, but super cute! Only one therapy today, a make up session of PT, but she did well with it. Afterward, her therapist moved her to the stander and she stood for almost an hour in there. We may have overdone it a little though, because tonight I saw she has big bruises on her knees! :( We are ordering new gel padded knee pads for her stander...sure wish they would hurry up and get here! You wouldn't have known it was bothering her though, she was a perfect angel. This afternoon we decided to have another little Valentines Day photoshoot. When we tried it the other day, there wasn't a smile to be found. Today was the exact opposite! Super smiley! But also very crunchy and putting her hands in her mouth that was a challenge! We got some cute ones though. She did start holding her pees again today. Ugh. I know. Not again! Only three all day today and she needed help for 2 of those. Tonight she seemed a little neurologically off. Very tense body. Hard to hold because she'd stiffen her whole body out. Not sure if I actually saw anything seizure-ish per se, possibly. Really hoping she can wind down a little and get some sleep tonight!

Thursday, February 9, 2017

Good but a bit kooky

Reagan had a good day today. Awake and vocal by 6:30am. Very sweet and smiley all day. Very crunchy and kooky! She had a busy day of therapy with PT, OT, and school! She was a little easily excitable, not a fan of people talking around her (only to her). She was also having some gas, which I think could be causing some pain/vocalizations. During OT they did a fun jello activity and Reagan was loving putting her hands in the RED jello (and then trying to cram her hands into her mouth)!! Silly girl! They're going to do this again on Valentine's Day so I'm sure Reagan will be thrilled about that!

Wednesday, February 8, 2017

From serious to super smiley!

Reagan slept well and woke up calm and content this morning. Not smiley, but content. Very still, she looked like she wanted to doze back off. She had speech this morning and did ok. She wasn't a huge fan of her therapist talking to her nurse...definitely wanted all attention to herself. She was very crunchy, hands in her mouth/hair a lot. She had school this afternoon and did well, but the crunchiness did provide some challenges. She seemed less sensitive tonight and she just got more and more smiley as the night went on. I think the smiles were at an all time high! HUGE smiles. So sweet and so precious. Making little sounds like the coo of a dove. Oh how I love this girl...

Tuesday, February 7, 2017


Reagan slept well last night and slept in until 9:30am this morning. She woke up serious but calm. And no pee, but thankfully 20min or so later she went on her own. She was pretty groggy and even dozed back off to sleep for a bit but was awake in time for PT. Awake, but just barely. Very lethargic. At least her therapist was able to get in some really good stretching! She did raise her arm up to wave to her therapist when she left. Sweet girl. Her OT came shortly thereafter and was able to persuade her to do a little work. She's just been super still and super quiet today. Very unlike her. After PT and OT we went to see her reproductive endocrinologist to talk about the fluctuating hormones and seizures we've been seeing at least once a month. She did a quick exam but most of our time was spent talking about things we can do after Reagan actually "officially" starts puberty (even though her hormone levels are already clearly there). So unfortunately there's not much we can do right now except wait and see (and possibly increase her seizure medication). Ugh. Not exactly what I was hoping for. Then we got to sit through 5 o'clock traffic on our way home! Oh fun. Reagan was great though. Just so laid back and calm today. So still. Zero hint of a smile. Not sure what to expect tomorrow. Praying this is not the calm before a storm...

Monday, February 6, 2017

On edge

Reagan was up early this morning. I moved her to her chair and let her watch some cartoons. When I woke back up Ryan was waking up and Reagan was still wide awake. She's been a little on edge and sensitive this morning. She had speech and she was easily upset but redirected fairly easily. She hasn't been a fan of talking pretty much all day. This afternoon you could tell she was escalating. I was talking to her nurse and she was almost in tears. We decided to finally try oxycodone. It helped her to doze off and she slept the rest of the afternoon. She didn't actually wake up until just before 9pm. She woke up serious but was getting increasingly aggravated. I gave her another dose of oxycodone. She was pretty zoned out for a bit and looking like she was going to doze back off when I decided to wipe her mouth (it was a little crusty). That seemed to trigger a seizure-like event. Her eyes were fixed and her arms stiffened to her side. Her head was already turned so that was hard to assess. It only lasted 30sec or so, but ugh. Hate these hormones. Hoping she feels better tomorrow.
Ryan wanted a crab youtube to the rescue again!

Sunday, February 5, 2017

Good but no smiles

Today was a good day for my girl, but not necessarily smiley. We wanted to try to get some Valentine's Day photos of her and lets just say she was less that thrilled. She was cooperative, but we never even got one hint of a smile! Oh well. We will try try again. Still got some semi cute ones. Not much going on today. Mike cleaned the garage (something he is very relieved to finally have accomplished) and we all watched the super bowl tonight. What a game! Very exciting. My girl was starting to doze off on the floor (from all of the excitement) and I picked her up and snuggled with her and she quickly fell asleep. Sweet girl. Hoping for a good week this week.

Saturday, February 4, 2017

Lazy Saturday

It was another easy going day. Very dreary outside, so we all just hung out in front of the tv all day today. Reagan was in a good mood. Super relaxed and calm. Not much else to say.