Sunday, January 8, 2017

Reagan met her Irun4 runner!

Reagan was awake and smiling this morning when I got up! Sweet girl. Such a darling. Still holding her pees though and very tense in her body, but oh so precious. Today she had the opportunity to meet her runner from IRun4!! Reagan's runner Julie lives in South Dakota but is here in Texas visiting her friend who just moved to San Antonio! I never actually thought we'd ever have the chance to meet her living so far apart, but this was so cool! She came this afternoon and we all sat around and talked for a while. She gave Reagan a present, some really cute, comfy socks and Reagan gave her some medals from races she has run4Julie! Pretty cool. We're even planning on getting together with her some time later this year so she can actually push Reagan in a race! So fun! So glad Reagan was happy and in a good mood for her today. Now...if we could just get this girl to relax and start peeing again!

Saturday, January 7, 2017

Sweet girl

Reagan was awake and laying quietly at the top of her bed when I went in to check on her this morning at 7:45am. I brought her downstairs (still pee all night) and put on cartoons. Reagan was very stiff in her body, similar to yesterday, but very smiley and sweet. Super cold this morning (for Austin anyway). It was 19 degrees when we woke up! Glad we decided to postpone our long run til tomorrow afternoon! Reagan was still in need of a pee and getting increasingly vocal (but still sweet) so I decided to break out the warm water. It worked like a charm and she had a huge wet diaper, but she also appeared to have a seizure as well. At some point I noticed her head was turned all of the way to the left and her eyes fixed upward and to the left. It only lasted 30sec or so, but man, I'm sick of seeing these. She definitely seemed neurologically off to me yesterday, so I'm not surprised to see something like this today, but it doesn't make it any easier. Still think hormones are to blame. Other than that hiccup, she had a good day today. We all just hung out watching football and staying out of the cold! Not super exciting but we're all pretty happy the Texans won! Hoping for a warmer day tomorrow. Crazy Texas weather! It'll be back in the 70's in a few days!

Friday, January 6, 2017

Tense but finally some smiles

Reagan slept in this morning not waking up until around 11:45am. She woke up calm/serious but tense in her body. Thankfully she was still peeing on her own, but not a ton of wet diapers today. Very serious all morning. No smiles whatsoever...and we tried! She also seemed a little neurologically off. Eyes weren't quite working (a little googly). And the tone in her body is just through the roof! Her nurse tried stretching her but her legs were just so stiff (but bent). Finally this afternoon she seemed to loosen up a bit and she was giving us some smiles. Tonight she's been very precious and sweet. Still tense in her body and no longer peeing on her own (but went with help). It's midnight and she's still awake. Hoping Daddy can get her to sleep without medication. Fingers crossed!

Thursday, January 5, 2017

Better but still a little stressed

Reagan slept well last night on the floor. We didn't even attempt to move her, she was SO miserable last night we were just happy that she was able to get some rest/relief. She did wake up pretty stressed but calm. Wasn't a fan of me messing with her to change her diaper...just wanted to me left alone I think. She had one little outburst of tears for her nurse but it was shortlived and then she was fine. She was pretty sleepy and serious and eventually dozed back off in her tomato chair. We cancelled PT even though she woke up in time, she just had that look on her face like don't even think about messing with me. She definitely chilled out more as the day went on and she even had a good session of OT this afternoon! Overall, I'd say a huge improvement from her day yesterday. Tonight she had a weird experience tonight where she burst into tears all of a sudden. She was just sitting in her tomato chair perfectly peaceful and content when next thing we knew she was hysterical. Mike had just taken a phone call, so we initially thought it was just him talking on the phone that upset her. But I picked her up and held her and then she had a huge pee (all over me) so then we thought maybe that's what set her off. I moved her to the floor and the rest of the night she was very still with her head turned to the left and kinda out of it. I could get her attention when I tried, but she was just a little zoned out. No more pees tonight so hopefully she's not starting to hold. Praying for a good night's sleep tonight and a more normal day for my girl tomorrow.

Wednesday, January 4, 2017

REALLY bad day

It's been a miserable day for my girl. She didn't sleep well last night and was tossing and turning a lot. Finally around 4am she was vocalizing and obviously not going back to sleep, so I moved her to her tomato chair and gave her some clonidine. I'm not sure if she ever actually went back to sleep. She let me sleep for a while though and then both kids woke me up around 7:30am. Reagan was more tense, but calm. She let me know she was awake by a loud squeal! She was doing a lot of teeth grinding and foaming at the mouth, so I was a bit worried about what the day might have in store. I was downstairs getting Reagan's medicines at 8am when there was a knock at the door. It was her nurse (who was supposed to be off today)! Apparently the nursing agency never told her she could have the day off, so she assumed she still had to work! I was glad to see her though and even happier to have her around the rest of the day which proved to be very challenging. Reagan just got more tense and stressed as the day went on. She had a strong acidic smell to her breath...indicative of "bad days". Lots of laugh/cries. Very vocal but moany, like she was in pain. She responded well to oxycodone though and it helped her sleep a lot of the day. However, it wasn't a restful sleep (she kept yelling out during sleep) and it was brutal when it wore off (tonight it only gave her about 2hrs of relief instead of 4). She seemed to be the most uncomfortable tonight. Lots of crying, not responding to meds, and just plain miserable. Mike said it seemed like something was torturing her! It was that bad. Definitely the worst we've seen in a LONG time. He finally got her to sleep on the floor of her therapy room. Not sure what sleep will look like tonight. Praying she can get rest and sleep whatever this is off.

Tuesday, January 3, 2017

Good day but a few signs of trouble

Reagan alerted me with a squeal this morning (again right at 6:45am)! I went in to find her bright eyed and wide awake! I changed her and moved her to her chair to watch cartoons. She's been super sweet today. Big eyes. Very interactive. Her body has definitely been more relaxed, especially this morning. Less hands in the mouth. She's had a busy day of therapies today. First PT, where she clearly said "Hi" to her therapist when she came in the room! She then worked hard on sitting to stand. Shortly thereafter, she had OT. She did well with that too. A little loosey goosey in her body, but so good at responding to commands. Then she finished up her day with school/vision therapy. She did a great job with that as well. Was really using her hands today (I'm guessing because they were in her mouth less) and she enjoyed a singing switch toy her therapist brought for her to try out! Tonight she's been a little more vocal, but she was also very gassy, so I'm sure that's at least partially responsible. Doing some mouth movements, indicating that she might be a little more spitty and having a hard time managing it (but not necessarily gaggy per se). Just a little less laid back tonight in general. Some teeth grinding. Not a good sign. Hoping she'll settle down and get some sleep.

Monday, January 2, 2017

Cutey patooty

Reagan was awake and squealing by 6:45am this morning. I found her in bed, laying on top of her covers! I changed her and moved her to her tomato chair, where she continued to be vocal. She definitely settles down and is less vocal the more you interact with her, so I think it might be partially attention seeking. Silly girl. She had a great session of speech this morning! She answered lots of questions (all correctly) identifying animals in the story she was reading! She was still very into her hands today and she's got a new finger on that left hand that is looking pretty soggy. Poor fingers. Mid day she was looking sleepy but restless and couldn't really stay asleep. This afternoon she had school and speech. She did well with it, great both her teacher AND her speech therapist with a "Hi"!!! At one point during the session she was getting a little vocal but calmed down after her AFOs were removed. After school, we did a quick bath and got her smelling all good. Tonight she's been vocal but sweet. Still full of gas. But she's just the cutest tooter ever!