November 24, 2018

Today was Annadelle’s first day doing PT and OT straight through for 3 hours. We started at 9:00am and ended at 12:00pm right in time for lunch and I have to say I think she did very well.

Yesterday, PT Anne Claire had Annadelle doing things like log rolls, sitting up trying to do criss-cross applesauce, and getting on her belly which wore her out pretty well. Today’s PT (Lord bless me, I can’t remember her name) had Annadelle doing even more including crawling to get a toy and supporting herself on her hands and knees. She obviously can’t do any of it by herself, but she helps while they do most of the support. The intention is to “wake up” her muscles that she hasn’t used for so long- to remind the brain to tell those muscles to move- and strengthen those muscles so that she can eventually do all of this on her own.

She has made significant improvement since we have been here only a few days. She honestly dreads going to the PT gym, but overall she is much happier here at Children’s. There is much more for her to do and she gets a good bit of freedom here. We spend all of our extra time exploring the hospital or going to Starbucks to get pink cake pops. There’s no telling how much we have spent on cake pops over the last few days.

Annadelle has been taken off of PEDS service and is now exclusively rehab. This is wonderful news. It means medically she is doing great and now can just focus on her PT and OT. She is still being weened off steroids which can take a while. They lower the dosage once a week.

The only bad news I have to report today is that she has developed the beginning of a pressure sore under her left ankle. All this time in the hospital, Chris and I have focused a lot on making sure we turn her to avoid pressure sores. Last night I meant to put some pillow boots under her feet but fell asleep and forgot. Annadelle had asked that I take them off for a bit because she was hot and we both just fell asleep. When we woke up this morning and I checked all her pressure points, I noticed the redness under her ankle. It has not broken the skin but it is sore to the touch. I asked the nurse for a Mepilex and covered it while in PT/OT and then put the pillow boots on her for a while. We will have to wear her multi podus boots once her pressure sore heals, so we are making sure to baby it in the meantime.

Annadelle was *so* excited to see some of our family during a visit today. Chris’ sister, Heather, her husband, Lee, and their two boys, Eli and Asher came to visit along with Annadelle’s older brother, Hayden. Children younger than 12 are not allowed to visit the floors during flu season so we took a stroll down to Children’s Harbor and played for a while.

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While we loved getting to visit family, being out in the activity hub was a real eye-opener as far as Annadelle’s mobility. She wasn’t able to play some of the regular games like her cousins and brother could. I think even she realized just how much she has to rely on others to do “normal” activities. At one point she had to use the restroom so Heather and I took her to a handicap stall. Heather helped me to get her pants down as I held her up and put her on the toilet. There is absolutely no way I could have done it all by myself, prompting myself to think about how on earth are we going to do this when we leave the hospital? What if we want to visit the mall or the beach or any public place? It made me realize just how much the parents of special needs children go through on a daily basis.

Right now Annadelle and I are sitting at the end of the long hallway on our floor overlooking UAB Medical Center. I’m updating the blog and she’s playing PBS Kids on my phone. I put her in a chair next to me out of the wheelchair and I’ve sat here for a bit and watched how she sits. You can tell she is tiring out easily.

Friends, we have quite a long road to go. Mentally I thought I was prepared but I’m questioning my own emotional abilities at this point. Please continue to pray for us in the upcoming months.

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