Tag Archives: Encore Rehabilitation

12/16/2019 Mid December Update

Our Thanksgiving was pretty great! We spent a few days back in Alexandria, AL with my husband’s side of the family which felt like a mini vacation from reality. No therapies, doctors appointments, or school- just a few days with our little family. We decided to stay in a hotel (which Annadelle loved) because it is much easier to get her in and out of a hotel rather than worrying about steps.

While in Calhoun county, we were able to see some of my side of the family, too. I have missed them so much since we moved and especially since Annadelle got sick (especially my cousin, Robin, who is like a sister to me). Dealing with her illness and subsequent recovery has paid a heavy toll on my emotional and mental health, and having people around who “get” you is really vital.

Over the past several weeks, I have been struggling to remember who I am. I know it sounds crazy, but it is like I had been so engulfed with navigating life as a special needs mom that I really forgot who I am as a person. Like, who am I? What do I like? What hobbies do I have? It’s really crazy to even ask yourself that! I have been struggling to find a job (that I really need!) and that is definitely not helping with my emotions flying all over the place. I mention all of this because I want other newly-diagnosed AFM moms (and dads) to know you are not alone if you begin to feel the same way. I have a few other AFM friends who have talked to me about the same thing. In this way, we are family dealing with the same fears, the same struggles, and the same emotions.

We try to make sure Annadelle stays in her walker at least once a day for an hour or more. Most days we are successful, but some days it just doesn’t seem like there is enough time in the day to accomplish everything we need to get done. We are blessed that the school staff makes sure she is in it twice a day while at school, and we have recently discussed (and started) putting her in the walker for P.E. Annadelle has not wanted to spend a lot of time in her walker so we are trying to come up with ways to motivate her. Unfortunately there is not much working to motivate her and we’re really at a dead end on that front. My mom and I tried to get her tickets to meet Jojo Siwa since she will be in Pensacola in May, but the meet-and-greet tickets sold out very quickly. Annadelle really wants to meet Jojo since she is walking in her walker now, as that is something we essentially promised her early on. I kind of overpromised on that and am scrambling to find a way to make that happen.

One thing I think will help will be having her refitted and adjustments made to her KAFO for her left leg. It is about an inch too small right now so we have made an appointment with her orthotist next week to get that fixed. Hopefully with her KAFO adjusted she will be more comfortable walking. I’m praying that Chad can just adjust the KAFO for now so that she doesn’t have to be without it for a few weeks. She cannot walk without the KAFO.

Therapy at Encore is going wonderfully and we are definitely seeing improvements. Annadelle is able to get on all 4’s very easily and is actually getting on “high knees” for long periods of time. Yesterday I was with her in the living room while Chris went to the Table (a church service). I was sitting in the recliner and Annadelle was on the couch. I turned to look at her and noticed she had gotten up to high knees all by herself! This is a HUGE improvement and shows us that she is really gaining strength in her butt and legs.

The photo above is an example of her in the “high knees” position.

Tonight Annadelle participated in her school’s Christmas program. She looked so beautiful in her dress and I was so excited to see her be able to participate with the other kids. All of the kids treat her as their equal and that is honestly so wonderful to see. I had been worried she would be treated differently, but for the most part she is treated wonderfully!

I will make another update after Christmas. We have a few appointments scheduled during the school break so I am sure I will have a lot more to update about then. I try to include as much as possible in our blog for all of the other AFM families out there struggling to get information about recovery so if you are that family, I pray I have been able to provide you with a little guiding light and, most importantly, a ray of hope. Recovery with AFM is possible- you just have to keep pushing. Keep believing. Keep praying. Keep working.

Persistence pays off.

November 1, 2019 Halloween, Red Ribbons, and New Therapies

This has been an exciting week for Annadelle. For the past year (literally), she has continued to talk about how much she was anticipating Halloween. While in the hospital last Halloween, Annadelle was in the hospital (in the PICU) and on a vent so she was not able to trick-or-treat (either at home or at the hospital). The doctors and nurses tried to make Halloween fun for her, especially nurse Christy who brought her a bucket of candy and asked the other nurss to come to Annadelle’s room to trick-or-treat. Unfortunately, Annadelle was just too upset about being in the hospital to enjoy it.

Annadelle dressed up as Princess Belle for a neighborhood cart-or-treat in Bear Point

Halloween has always been one of her favorite holidays besides Christmas because she loves to be able to dress up. Having to tell Annadelle she couldn’t participate like she wanted to broke my heart.

Needless to say, I put some effort into Halloween this year by ordering her a beautiful Princess Belle costume off of Amazon. I’m not a very “Pinteresty” mom and I’m usually last minute when it comes to buying a costume, but this year I deserve a cookie or something because this costume was awesome. I ordered her a size 7 since it was as large as was available, thinking that maybe since she has lost some weight it would fit. Well, I was right- it fit like a glove!

Annadelle at school dressed up as “Miss Jennifer” (her para professional)
Annadelle and her dad trick-or-treating in Captain’s Cove

Speaking of weight loss, Annadelle has lost close to 16 pounds since being on a sugar free diet. Some refer to it as a ketogenic diet or low carb diet, but her diet doesn’t fully fit in to either one of those categories. We just try to give her whole foods, little starchy carbs, and low glycemic fruits. We aren’t super strict with her diet because she often gets treats at school (example: birthday parties), but overall her diet has changed a good bit.

When we first started sugar-free, we caught a lot of flack from our friends and family. Some said it was “cruel” to keep the foods she loves away from her. I admit it was rough the first week or so, but after the initial shock of changing her diet she has adjusted to it well. Plus, it’s working and we have seen some amazing improvement since she has lost some weight, such as being able to pick herself up from her wheelchair and transfer to her walker by herself (with her KAFO). She can also hold “high knees” for extended periods of time, army crawl, and lift her left leg up completely. Chris and I are also following the same diet to try to make it easier for her. I’ve lost 13 pounds and I’m not sure how much Chris has lost, but he’s a skinny mini now. He’s started working out frequently and has built up quite a bit of muscle. He says he wanted to since he was lifting Annadelle so much, it makes it easier for him to take care of her.

Annadelle in her Crocodile walker during the 60 minutes she uses it at school (as a part of her IEP)

Annadelle has been loving the first grade! Chris and I recently met with the IEP team and tweaked her IEP after having her evaluated for PT and OT. Educational PT and OT is much different than outpatient PT and OT because the functional goals are often different, but it is important that AFM kiddos get as much PT and OT as humanly possible! She will now receive PT once a week at school which is wonderful.

We also adjusted her IEP to remove the use of the mobile stander and replace it with the Crocodile walker. Miss Jennifer (her wonderful para) or another member of the resource staff puts her in the walker everyday for at least 60 minutes. This means we send her to school wearing both her AFO and her KAFO to decrease the “setup” time for her to transfer to the walker. She has been doing very well wearing the braces all day and tells me it is much easier to stand to go to the bathroom. She says she holds on to the bar while Miss Jennifer helps her with her clothes, then transfers to the toilet.

Annadelle with her friend Grayce during PE at school
Annadelle with classmates and teacher before her school’s parade for Red Ribbon Week

Our next IEP goal will be to have Annadelle utilize her walker for the 60 minutes during resource and ALSO during PE. Our ultimate goal before the end of the school year is to be able to send her to school ONLY in the walker. I am beyond grateful that we have such a supportive school staff that is helping Annadelle to achieve her goals. It takes a village!

Annadelle with her friend Haley swinging in the park during cart-or-treat

Annadelle has continued to show improvement over the last several months, including improvement in her core strength. We noticed she has made significant improvement during the Bear Point cart-or-treat prior to Halloween when her dad put her on the swings with her friend, Haley. I took a picture from far off and couldn’t believe how well she was doing.

We believe she will continue to show improvement for years to come, not just because reports from AFM parents whose children were diagnosed years ago says so, but because we have faith that she will. Especially now that Annadelle has started therapy again at Encore Therapy in Foley, about a 25 minute drive from our house. It is much closer than the previous facility we were going to in Fairhope.

Today we visited Encore so that Annadelle could do her initial evaluation with PT and OT. Her new PT, Tina, and her new OT, Sophia, said they were excited to be treating her. Sophia said she had done some training at Children’s Healthcare in Atlanta and had treated several AFM patients while there, so she is very familiar with the disease and how to treat it! WHAT!? I couldn’t believe it!

We go back for her first therapy session on Monday after we visit Dr. Sharkey (chiropractor). I am beyond excited to see how she progresses and will be posting some videos after that session so that we can “see” how well she progresses in a few months.

As always, thanks for the continued support. ❤