November 29, 2018

I know it has been a few days since I updated. I had a project I was working on prior to Annadelle getting sick, so now that I have had a little bit of time to continue working on that, I’ve been lax with updating the blog.

Annadelle has continued to make slow progress in PT and OT over the last few days. She is now moving all of her limbs at least a little bit, but she is still unable to move her left foot. She can wiggle two of her toes on that foot, but there is no action at the ankle or for “pull up” and “pedal down”.

Prior to today, we we worried that she was not engaging her shoulder muscles on the right arm (the muscles that would allow her to raise her arms over her head), but an exercise done today by Miss Holly showed she was indeed engaging those muscles.

From what I understand, as long as Annadelle is engaging the nerve, it is up to working the muscle and strengthening it in order for her to move like she used to. I could be wrong on this so take that with a grain of salt. Truth be told, I haven’t asked many questions for the simple fact I know God is going to fully heal my sweet girl. I’m not sure how to explain the peace I have over the entire situation. I am confident in His power.

Today in PT, Annadelle sat on a swing and pushed her legs to swing herself. The best comparison I can make would be like her sitting on a porch swing where her feet could touch the ground, then pushing the swing back and forth with her legs. Her trunk balance has improved a lot but she is still considered a fall risk. During her time on the swing, she sat up by herself and maintained her balance. We also utilized the gait trainer and practiced “walking”. Miss Ann Claire helped her to go through the walking motion. Annadelle would our weight on one leg, pull up on the opposite leg and step forward, then transfer her weight to that leg. She continued this for a few feet with Miss Ann Claire’s help. I’m not able to take photos or videos in the gym since other patients are present, but we saw a drastic improvement walking here than a week ago while at USACW. We are praying that she at least has enough strength to walk with a walker before we leave here, but we have a long way to go before that happens.

Chris’ mom, Dorothy (or “Granna” as Annadelle calls her) came to visit for a bit this afternoon. She brought us some home cooking. Chris and I have said we never, ever want to eat out ever again after we get home. We have eaten out for 2 months straight and we are over it.

While Granna was here, we ventured around the hospital as is our routine after PT/OT now. We also took a ride over to Children’s Harbor to play some games. We had Annadelle practice using her left and right hand/arm playing air hockey and she did well with it. She complained about using her left side after only a few minutes. She said it didn’t hurt so we suspect she is growing frustrated about not being able to use it as she used to. Hopefully that will get easier as she uses it more. We had considered using “restrictive therapy” by putting the no-no on her right arm to encourage her to use her left, but Chris and I are both worried about her losing any use of her right arm from it not being used.

Chris had mentioned that during a time when I wasn’t in the room, Dr. Davis had mentioned the possibility of all three of us staying at the Ronald McDonald house and coming over to the hospital for PT/OT on an inpatient basis. I am wondering if he meant us coming on an outpatient basis and Chris was just confused. I am going to ask him about it tomorrow just to clarify. We would love to be able to do that so that Annadelle could actually get out of the hospital for a while. During our nightly strolls around the hospital, she always asks if we can go to one of the restaurants nearby. We have to explain to her that she can’t leave the hospital every time. Luckily, at this hospital, you can travel about 7 blocks without every leaving the building. Each of the buildings are connected by tunnels so she is able to get around and experience a little bit of what “normal” life is like.

While we are excited about the possibility of going home soon, we want to ensure Annadelle receives the absolute biggest amount of inpatient rehab she can get. She is obviously benefitting from it and it is our belief she will continue to improve at a rapid pace as long as we can continue to have at least 3 hours of therapy a day. Without patient rehab, she would only get an hour a day three times a week- a drastic difference from what she is getting now.

With that being said, even when she is not in the gym, Chris and I are always working with her to engage her muscles. We do a lot of bed exercises and are always encouraging her to use her muscles or to do the most she can do. It may be something like wiping herself in the bathroom or putting on her own sock. We make her work as much as possible. Dr. Davis mentioned that, in his experience, patients with the best recoveries typically have very active parents who are encouraging their children to do as much on their own as they can.

Our sweet girl is improving but she still requires maximum assistance from us. I’m so thankful that we both have been here. I know I would not have been able to handle this on my own.

Please continue to send up many prayers for this princess of ours!

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