Tag Archives: CRS

November 2019 Update & Christmas Wishes

We are now 13 months post-onset and continuing to see improvement. Praise Jesus for His healing hands. Amen?

The photo above is a grab from the weekly report sent home from Annadelle’s resource team each week. Every day she is in the general education classroom, but sees two separate resource teachers for reading and math. On Thursdays, she goes to speech and on Mondays, she does in-school PT. In other words, she has a busy schedule! We are beyond blessed for Annadelle to be at the school she is at.

I was so excited to see this note that Annadelle is now in her walker twice a day. She is no longer using her Rifton wheeled stander so we will be returning it to CRS within the next week or so. It is quite the drive to Mobile so I’m working on scheduling a time to get over there and return the stander. Now that she has the walker, the IEP team met and we determined we needed to get her in the walker more. As you can see, she is now in it twice a day in just a few weeks time. She is really progressing wonderfully! Even now as I type this, she is scooting around on the living room floor cleaning up her toys. This is a huge improvement and is something she has been working on in therapy. She is also able to lay on her back and push her butt up off the ground much better than she could a few months ago. It makes it much easier when trying to get her dressed!

While at PT/OT at Encore, her therapists have been working with her on improving her core strength, having her use her left arm, and navigating her walker without the side brakes on. She’s not comfortable enough to be without the side brakes on all the time, but she is definitely improving. Last night we put up our Christmas tree (before Thanksgiving for the first time ever I think- I usually never win that fight, but this year Chris gave in) and Annadelle helped me to decorate it. I put her in her walker and she stood at the tree while I handed her ornaments to put on. If you’ve ever let a 6-year-old put ornaments on a tree, you know you likely have to go behind them and move them around so they are spread out. I did that a little bit, but she was good about moving her walker around the tree to space them out. She did all of that with no brakes on, even on our tile floor. Although, she did tell me when we started, “Mommy! I don’t have my brakes on!” “Yeah. I know,” I said. She looked at me with confusion then went on her merry way (pun intended).

Annadelle is still on a modified ketogenic diet (sugar free), although we have been a bit lax over the last few weeks. She hasn’t gained any weight, but she hasn’t lost any either. Mommy is struggling to stay on track, too. 🙂 We had family visit recently, and when they visit it has sort of become a tradition to visit The Yard in Gulf Shores. This place has amazing milkshakes, and all of them have a whole separate dessert on top. It is definitely not sugar free (but soooooo worth it)!

My mom and I recently saw where Jojo Siwa will be coming to Pensacola on Memorial Day weekend, so we are going to try to get tickets to see the show. Annadelle really wants to meet Jojo so I need to get to work on that. We had told her that she could meet Jojo when she started walking in the walker during the day without her chair and I have a feeling that time will be here sooner than later. She told me she wanted to meet Jojo for Christmas.

Speaking of Christmas- I had the most heartbreaking conversation with Annadelle about Santa. She asked me, “Mommy, does Santa Claus grant wishes?” I thought for a moment and asked her, “Why? Do you have a wish you want granted?” She said she did and I asked her what it was. “To get to walking again,” she replied.

This was one of the first times Annadelle had specifically talked to me about walking, or rather wanting to walk. She will say, “When I get back to walking, can we go to OWA?” but she has never specifically said she wants to walk. She usually just talks about walking like it is for sure something that is going to happen. Chris and I believe that she will be walking alone in time, but convincing a 6-year-old of that can be difficult.

I told her no, Santa does not grant wishes like that, but Jesus would. All she has to do is ask Him. We talked about how to pray for things that we want- no material things, but for things like healing and later that night we prayed for that. I have prayed for her to walk every single night for 13 months now and whenever someone asks me how to pray for her, that is what I say. Of course I ask the same thing now. It was one thing when I wanted to walk, but now it is a whole other thing when she asks for it.

I wish I could tell you how heartbreaking it is not to be able to fix this kind of problem for your child, but it is a feeling even I don’t know how to describe.

March 13, 2019 Birthday Eve

Tomorrow is Annadelle’s 6th birthday.

She is so excited about her birthday and her party that I have scheduled for the 23rd. We decided to do an indoor pool party for her so that she will hopefully be able to interact more easily with other kids. She moves more freely in the water and I’m excited to get a bit more therapy in while she’s having fun.

My mother-in-law is coming in to town tomorrow for Annadelle’s birthday. Right now our plan is just to bake cupcakes sometime during the day and possibly go out to eat as a family at night. When given the opportunity to choose any restaurant, Annadelle said she wanted to go to Chick-fil-A.

As far as therapy, we have been continuing going to Fairhope each day. Her therapists have told us (basically) that we need to focus more on her core strength than we do her legs, because if she does not have enough core strength to support herself, she can’t walk.

Our goal is to continue putting her in the stander and using the knee immobilizers. We are now going to incorporate a lot of time on the floor to practice rolling and balancing. Exercises like partial sit-ups and reaching is going to help increase the strength in her core, and hopefully she can walk soon after that happens.

I am not overly impressed with the facility, but there is nowhere else closer to us that will accept her as a patient. Thomas rehab is not set up for kids with severe spinal injuries. We have decided to drop her rehab from 5 days a week to 3, possibly 2. We are going to replace those missing days with swimming at the community center. It will be a lot of work on us, but traveling to Fairhope each morning takes the majority of our day so we aren’t able to get as much in at home as we would like. Right now time is precious to us. I’m praying we are making the right decisions to ensure she is able to have as much recovery as possible.

I received a call today from one of the neurologists at Children’s of Alabama who is requesting that we come back to Birmingham so that the neuro team can see her in clinic. They also want to do another MRI and place her under anesthesia. I asked what their reason for a repeat MRI would be and was told it will help them to determine what kind of recovery she will have.

For some reason this phone call infuriated me. Almost every single doctor we have spoken to, with the exception of Dr. Pardo at John’s Hopkins Hospital, gave us conflicting information about AFM and recovery rates. Many doctors simply don’t know outcomes because there is not enough information to provide accurate statistics. Many, many, MANY of the doctors we have spoken with base predicted outcomes on outcomes from patients with different diseases, not AFM.

The truth is this neurologist that contacted me today wants us to have an MRI because Annadelle’s diagnosis is so rare that a repeat MRI offers a valuable learning experience to the team. I am simply not willing to put her through yet another MRI, needles, or any additional time in the hospital that isn’t absolutely necessary for her recovery.

Besides, Dr. Pardo already told us he believed she would make a full recovery, so what would happen if these less experienced doctors told me something different? I’d be an absolute wreck, that’s what would happen. I’d much rather continue to put my trust in God that she will walk again. Chris agreed.

Prior to therapy today, I met with Jeremy, a rep from NuMotion, and Patty, an employee of Children’s Rehabilitation Services in Mobile. We had the meeting in order for them to measure her for a wheelchair and to complete a quick exam to see what she could do and what she couldn’t.

We decided to order her a Ti Lite Twist manual wheelchair. The chair is the exact same one she used at KKI and is light enough that she can easily move around in it. When compared to the other chairs, this was will allow her to grow width-wise and length-wise over the next three years which is the amount of time the wheelchair will need to last (at a minimum) before our insurance will pay for a replacement (unless there is a problem with the chair, in which case it is under a warranty).

She will also be getting the SmartDrive power assist option that will allow her to go long distances. She can push her wheelchair a bit, but she tires out very easily. The SmartDrive will make it easier for her to get around school when she goes back or even help on a simple trip to the store. Check out this link for more info about the SmartDrive. There are also videos at that link to show how it works.

Shelves in her room feature artwork that she created at KKI.

In preparation for my MIL arriving tomorrow, my mom helped me to get Annadelle’s room cleaned out and organized. She had received so many toys and gifts in the hospital that we literally did not have enough room for everything. We have been going through stuff to donate (from our entire house, not just her room) and ended up with two large carloads that my mom and I took to her church’s manna house today to be distributed to locals who are in need of those items.

We will continue working to gather her needed therapy items so that her room can be converted into a small gym. Many of our friends have purchased several items from our Amazon Wish List to help us with these items, and for that we are forever grateful! We are still looking for several items from our list. I have been scouring Marketplace and Craigslist to see if I can find any equipment used, but so far I haven’t had any luck.

I can’t thank our friends and family (and even strangers!) enough for all of the support you have offered over the last several months. Please continue to pray fervently for our sweet girl that she will walk again. I would give anything to see it happen.