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.
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.