Wednesday, September 28, 2016

Awake and good

Reagan had a good day today. She woke up at a normal time and had a nice big wet diaper on her own (without leaking...double bonus)! She has been vocal and sweet today. Not at all sensitive. We were orienting a new nurse today and we definitely would've know if she was sensitive to talking (it didn't seem to bother her at all). She had a busy day of therapy with speech, then PT, and then OT in the afternoon. She did well with everything. Tons of wet diapers today! I guess she's trying to make up for yesterday!

Tuesday, September 27, 2016

Sooo sleepy!

Reagan slept well last night, although we found her laying completely on top of her covers this morning. We also found her laying in formula as her extension popped out and was feeding the bed. Ugh. Everything was soaked. She was still out cold so we moved her to the floor and changed her and got her all cleaned up. She never woke. We transferred her to her therapy room so we could completely strip her bed and she slept in there the rest of the day. Never woke up. Well she opened her eyes right around midnight when I was changing her diaper but that was only for a few minutes and then she was back asleep. She held her pee all day today and only went three times. Two times her nurse had to use the hot water trick and the last time I was about to use the hot water when I realized she had just gone! It was quite the sleepy day for my girl today. Hoping for a happy/awake girl tomorrow!

Monday, September 26, 2016

A little sensitive and prayers for Abigail

Reagan woke up this morning still sweet and maybe a little sensitive. We saw it a little more with us talking or music on tv. She had speech this morning and did well with that. Then this afternoon she had OT and got a lot of stretching done, which was great because she has been a little crunchy. This afternoon she had school/speech and did a great job with that as well until the last 10min or so when she had a little crying meltdown. We removed her AFOs and I picked her up and she calmed down pretty quickly. We're thinking maybe gas pains?? Maybe the teacher and speech therapist were talking and she didn't like it? Not really sure. After school we helped her poo and gave her a much needed bath and then she seemed more relaxed. She's been good the rest of the night. I did notice tonight she was holding her pee so I had to help her go just before bed. Thankfully she went no problem. I would like to ask you to pray for Reagan's little friend Abigail. Abigail lives in Washington and has mitochondrial disease and lots of similarities to Reagan. Right now she's in the hospital with a bacterial infection that has caused her movement disorder (chorea like Reagan has) to go out of control! Please pray for this sweet girl and that she's able to beat this infection and finally get some much needed rest. I know how heartbreaking it is to watch your child suffer like that! :(

Sunday, September 25, 2016

Picture no go

Reagan slept well last night and woke up a little serious this morning, but really warmed up as the day went on. She was very still (no hands in the mouth or hair) and smiley and we were thinking it would be the perfect day for pictures (she even was having a great hair day), but the weather had other plans. Grandma got here in the morning and Reagan really perked up for her. Grandma bought her this wonderful light up jelly fish tank that is so realistic and soothing to watch! We all love it! Ryan was mesmerized by it and so was Reagan! We were really holding out hope all day that the photoshoot might actually happen, but around 4-4:30 it started looking really dark outside. By 5pm it was pouring (we were supposed to do the shoot at 6)! So we've rescheduled for two weeks from now and we'll just hope that everything works out this time. Reagan was a little sensitive today in her eyes. It was hard to tell if it was just a sensitivity or something more neurologic. She kept having long blinks. Her hands were a little twitchy too, so I do think it was a little neurologic in nature. Not a fan. Hoping she can just sleep it off. Praying for some good solid sleep for my sweet girl.




Saturday, September 24, 2016

So precious

Reagan had a good day today. We all just had an easy going lazy day at home. Mike went to play golf with Grandpa this morning and Reagan, Ryan, and I all just hung out watching cartoons! Lots of football in the afternoon once Mike got home! Reagan has been super smiley and precious today. We're hoping to do a photoshoot tomorrow afternoon but there is some nasty weather in the forecast right now, so who knows what will happen. Oh to have such a sweet smiley girl tomorrow too! Precious girl.

Friday, September 23, 2016

Therapy woes

My girl slept well last night. She did wake around 4am and I went in and covered her back up and she fell back to sleep. She's been super smiley and vocal again today. She only had one therapy, PT, but she did well with it. We're currently trying to come up with an at home therapy plan for Reagan. We're going to have all new people working with her (since her nurse of 3yrs is leaving to have her baby) and we really want to come up with a daily regimen that integrates therapy into each day. Another concern is that Medicaid has been cutting everyone's hours and right now we are in a battle to get her back up to 2x a week (they reduced her hours to 1x a week even though she VERY clearly fits the criteria for 2x a week). They also just reduced her speech from 3x a week to 2x a week! She used to get ALL therapy 3x a week! It's despicable what the state of Texas is doing right now to people with disabilities. Don't even get me started. It's a constant battle and I've been on the phone with people from TMHP, Medicaid, and my senator's office every day for the last couple weeks. SO frustrating. Thank God for this precious, smiley girl...I'll never stop fighting for her! Today after school I took Ryan to get a much needed haircut. He's still not tolerating them. He was miserable and trying to squirm out of my arms the entire time. Thankfully he was less vocal than usual (he still was upset but not screaming/crying the entire time) and we were the only people there. It's done. Ugh. So traumatic. At least he can see out of his eyes again!!

Thursday, September 22, 2016

Still super vocal/kooky

Today was another kooky vocal day. Reagan woke me up around 5am this morning, vocalizing and completely uncovered in her bed. I changed her and covered her back up and she fell back asleep. She's been sweet and vocal again today. Lots of high pitched scream/squeals but still happy. She had PT, OT, and school and did well with everything. She's been super crunchy with lots of increased tone, but she was manageable. It was a jam packed day, so I'm thankful she tolerated everything so well. She really has been resilient. Hoping these good days continue as Grandma is coming this weekend and really hoping to see a smiley girl!




So spunky! Her brother picked out a little mermaid sticker to give to her! (How did he know?)