Tag Archives: Transverse Myelitis

October 21, 2019 Cactus Cantina

Tonight is one I will never forget.

A few weeks ago, we rode by a local Mexican restaurant called Cactus Cantina on our way home one night. As Annadelle looked out the window, she said, “Mommy?”

“Yeah?” I said.

“The next time we go to Cactus Cantina, I want to walk in there,” she replied.

Chris and I looked at each other, smiling. “Okay,” I said, “The next time we go there you can walk in.”

Immediately, I started planning a time to go and decided to invite a bunch of friends and family to join us. I thought we could do it as a surprise and have her friends encouraging her to walk in. You see, she’s been a bit of a turd about walking lately. She tells us it is easier to use her chair so there are times she will whine and cry when we try to get her to use her walker. “It’s hard!” she says.

When we realized she could probably use her walker a lot better than she made it out, we started adding more walker time to our at-home therapy. We learned that if she is distracted, she can make it over 2 hours at a time in the walker. That’s when we decided to start trialing wearing her KAFO all day in preparation for transitioning to the walker most of the time (instead of the chair).

When it came time to leave for Cactus Cantina tonight, a huge rain storm approached and made it difficult to see to drive. Lightening and thunder struck as we made our way to the restaurant. The devil sure was trying to ruin the night, but as usual he did not succeed. We pulled up and Annadelle noticed a blue Jeep pulling in just like the Watson‘s Jeep. “Is that Barrett and Sims?!” she exclaimed.

“I don’t know,” I replied. “It could just be a blue Jeep.” I was trying hard not to ruin the surprise.

Then she noticed Uncle Keith sitting outside under the awning. I thought surely she would figure out the surprise, but she didn’t. Even when she saw Barrett and Sims walking up, she thought they were just randomly coming to eat at the same restaurant we were. “We sure are seeing a lot of people we know!” she said as we made our way to the door. 🤪

Once she turned the corner and saw the crowd of people looking at her, she knew what was happening and tried her hardest not to show her embarrassment. Her friends all stood at the front door and said hello, and Grayce even gave her a hug. Soon after the crowd began to clap for her and we made our way to our seats. All in all, I counted 32 people who showed up for her surprise and to encourage her, some of whom we didn’t even know.

Annadelle with her friends Evie, Oakley, Laekin, and Grayce at Cactus Cantina

I wish I could explain the feeling I felt as I watched her interact with her friends, and how wonderful it was to see the kids treating her as if she didn’t even have a walker. She fit right in with them as if nothing was wrong, and it warmed my heart to know that although kids can be cruel, they can also be very loving. I am beyond thankful for these kids and for their parents who I am sure have talked to them about Annadelle, kids like Annadelle, and the concept of inclusion.

Grayce and Annadelle catching raindrops with their tongues on the way out

I know there was a time when I was praying and wishing for this day.

My friends, it has arrived. God answered my prayers and is continuing to heal Annadelle. I knew that if we stayed faithful to His promises that he would give us what we asked for in prayer. I have no doubt she will continue to recover.

And when that happens, what on earth will I write about then? 🤓

October 20, 2019 Milestones

We’ve had a fun weekend with friends and family in town for fall break. Annadelle’s fall break was Friday-Monday the week before, but she didn’t really get to enjoy it because she had strep throat.

Annadelle at urgent care being treated for strep throat

She got some antibiotics and bounced back pretty quickly, though.

Annadelle and her friend, Kade, who lives with TSC- a rare disease causing tumors throughout the body

While our close friends Carrie and her son, Kade, were here, we took a trip to the Hangout in Gulf Shores only a few minutes from our house. Carrie wanted to get some photos of the big waves coming in from the approaching storm so we went to the public beach access at the Hangout because there is usually a wheelchair mat there that goes out to the beach. Unfortunately the mat has been removed from that location and I wasn’t able to find where it was moved to, if it was indeed moved. So Carrie and Kade walked out to the beach while Annadelle and I waited on the sidewalk. She was really bummed out that she didn’t get to go on the beach.

Annadelle was upset that the City of Gulf Shores removed the handicap accessible beach mat at the Hangout

After Carrie and Kade came back to the sidewalk, we ended up over inside the Hangout and caught the “foam party” they hold on the weekends every hour. Annadelle has always wanted to go do that, but we’ve been hesitant not to mess up her wheelchair. The smiles and giggles that came from her playing in that foam were well worth the cleanup.

Annadelle and Kade playing in the foam at the Hangout
The aftermath of the foam party

As you can probably tell from the photos, we have been practicing Annadelle wearing her KAFO brace on her left leg for long periods of time in anticipation of taking her walker to school on Monday. Last week we had another IEP meeting to modify her current IEP to include the evaluations from PT and OT. The team decided it would be best to discontinue using the mobile stander at school for an hour a day and just put her in the walker for that time period. The PT is also going to have her use her walker during P.E. one day a week.

She does well in her walker compared to a few months ago, but she has a lot of balance issues. She can’t walk in it without the side and back locks on because she leans to the left when walking. We are hoping the more she uses the walker the stronger she will get and the more balance she will have. I think a lot of it is just having confidence so we will see.

Today we took a trip to HomeGoods (my new favorite store, by the way) and didn’t take her wheelchair. She was able to walk into and around the store by herself (with the back and side locks on). It took forever but compared to a year ago at this time, she has made huge strides. Chris and I continue to be eternally grateful for the progress she has made and have faith that she will continue to recover. There is no doubt in my mind that she will one day walk with that walker with no problem at all, and no locks on.

Annadelle during her first WALKING trip out in public!

We have hit a recent problem with therapy, as we have not been able to find a facility locally that will accept her as a patient. We continue to be told she needs to see a spinal cord injury certified therapist, but we can’t do that without traveling a good ways. Our schedules just don’t allow for it and it isn’t beneficial to Annadelle to travel so far for a 45 minute appointment.

We thought we had a therapist locally who would accept her (because she had agreed to do so the week prior), but that therapist decided not to accept her after all. I’ve been livid over her decision and have spent a lot of time praying about it. Two nights ago I made the decision to send her an email that I had initially intended to be an ugly one, but the Holy Spirit grabbed me before I could let that evil come from my lips (or fingertips, in this case). I ended up just telling her how disappointed I was in her decision not to accept Annadelle as a patient and urged her to reconsider. I haven’t heard back from her and doubt I will, but I feel better knowing I plead my/Annadelle’s case and did all I could. If it doesn’t work out, I know that wasn’t God’s plan and there will be another therapist who will be willing to fight for Annadelle.

Annadelle showing off her book report

Annadelle is doing very well in school and made all A’s and B’s on her report card! She has been working so hard in at-home therapy and at school to catch up. We are so thankful to the care team at school who have been working to get her caught up. We really are blessed for that.

Annadelle’s first school photo- 1st grade

We received her school picture proof this past week and I cried like a baby. She looked so beautiful and I just kept thinking about all the things that AFM took away from us this past year, included her first school photo from kindergarten. It’s stupid stuff to some people, but when you don’t get to experience it, it’s like the entire world ripped from you. I think not being able to experience some important milestones for us has made us much more appreciative of what we are able to experience now.

I was telling my FIL this morning that I thought I would dread seeing the Facebook memories from a year ago because our time at USAWC hospital in Mobile was quite traumatic for all of us. I would be lying if I said I had not woken up in sweats and crying dreaming about those nights in the hospital. But as time has passed, I realize I am able to look back on those times and see how far she has come, not what she can no longer do. Of course I still have moments of great sadness, but mostly I am just so grateful to God for what we still have. She’s here with us. She’s thriving. She’s loving life. And she’s continue to defy odds like never before.

She’s truly a miracle, and for that I couldn’t thank God enough.

July 9, 2019

Since my last update, there have been a lot of changes in our lives. First, Chris’ youngest son, Hayden, moved in with us. He is 17 years old and is starting in to his junior year. He’s been doing summer workouts 3 days a week and got a job at a car wash, so he has met plenty of people and made friends quickly. Annadelle loves having Hayden here.

Updates are few and far between nowadays because progress is much slower. Although we see therapists or doctors pretty often, each day is pretty much the same ol’ same ol’.

It wasn’t until today that I was able to see the visual representation of the progress she has made. To be honest, I don’t see the progress like others do because I see her every day. But for those who go months without seeing her, the progress is much more evident.

In June, my sister-in-law, Heather, came down with her two boys, Eli and Asher. The boys are wonderful with Annadelle and they are really good about including her in whatever they do. They each love to be her little helpers.

While they were here, we all went bowling for the first time since Annadelle’s AFM onset. It turns out she really loves to bowl with help of the ramp. She was able to pick up a 6 lb ball easily and put it up on the ramp which is a big improvement. She is slowly getting stronger.

Our family also had a family reunion in Orange Beach during the month of June. Several of our extended family members have been keeping up with Annadelle’s progress on Facebook and were excited to see her in person. Some of our family members gave Annadelle some money while we were there. Later that week, we spent it on a Nintendo Switch which is something the recreational therapists used while we were at KKI in Baltimore. We were hoping it would help Annadelle with her left hand coordination and fine motor skills. And alas, it did because a week later Annadelle was able to give a “thumbs up” on her left hand for the first time since she got sick.

Later on, Annadelle and I traveled back to our hometown to attend VBS at my mother-in-law’s church. Annadelle used to go there with her Granna on Wednesday nights so the church members know her very well.

The first day I dropped her off, I felt very overwhelmed. Taking care of her all by myself was extremely difficult because I am used to sharing the duties with Chris. Needless to say, the first day of VBS I was an emotional (and physical wreck). As I watched her struggle to fit in on the first day, my emotions got the best of me. I went to my car and cried. I don’t even know how to explain what emotion I felt. The closest thing I can think of is “powerless”.

As a mother, all I wanted to do was to make sure she fit in. I didn’t fit in a lot as a kid. There were times I was picked on and left out. Even as an adult I have been left behind by friends as they find newer, better friends to hang around with on more than one occasion. It’s an ongoing issue that I really struggle with, and I guess I projected a lot of that fear from what happens to me to it happening to my child, especially now that she is disabled. It was always a fear of mine and is now a billion times worse so my emotions simply engulfed me in worry and sorrow as I sat there in my car.

Luckily, I was able to call one of very few friends I have and let it out. She reminded me of God’s promise and helped me to calm down. I think I really did have a panic attack.

By the end of the week, my fears proved to be nothing as Annadelle made many friends. The VBS staff were wonderful with her and I’m so glad she had such a wonderful time.

While we were In Calhoun county, we were able to see a lot of our family again. My cousin/more-like-a-sister Robin and Heather, along with our kids, went to see Toy Story 4 at the new cineplex in Pell City. The kids had a blast just being kids.

Annadelle is continuing therapy 3 times a week until school starts. We don’t have a schedule for when school starts but we are hoping to go at least 2-3 days a week. She will be evaluated for PT and OT at school after a few weeks. Right now we are working on her IEP and will meet with the team on the 18th to discuss the draft. Annadelle is so excited to be going back to school. As for me, I’m an absolute mess over it.

At the end of June, we were blessed to receive Annadelle’s new orthotic braces. She got an AFO for her right leg in the hopes it would help her with the hyper extension of that leg. She also got a KAFO for her left leg since she is not able to bear weight on it very much. He quads and glutes are firing in that leg, but she is still very weak. The KAFO just helps her to support the weight of that leg.

While in therapy, one of our goals is for her to be able to walk with the assistance of a walker. Getting used to walking is one thing, but learning to navigate and support yourself on a walker is another. It is a very slow process but we are praying that in a few months she will be walking with the walker. I wish I could express what an absolute blessing that would be for Annadelle. I have prayed for that continuously and respectfully ask that if you’re reading, you do the same.

The day she was fitted for the braces, she stood by herself for about 45 seconds to a minute. This was the first time she had stood by herself since the onset. I did not realize just how tall she had gotten until then. My little girl isn’t so little anymore. I feel like I missed so much of her growth while in the hospital. When she was admitted, it seems that she was so tiny. Now she’s a “kid”. I’m having a hard time with that realization.

We have ordered a Crocodile walker for Annadelle. We think it will arrive within 2 weeks.

Annadelle was also approved for an Amtryke (adaptive bicycle) through the local AMBUCS chapter. I’m not sure when it will come in, but I was told the chapter is covering the entire cost of the bike which is over $600. What a blessing! She has used the bike before at KKI and Children’s for therapy. The bike will allow her to spend some time outside having fun while also getting in a little therapy for her legs to help strengthen them.

Lastly, I’d like to share this amazing progress Annadelle has made after receiving chiropractic treatment. In conjunction with therapy, you can see in the comparison XRay just how much her posture and core strength have improved. The first X-ray was taken at the beginning of May, the second one was taken yesterday. I am just in shock of how much these treatments have helped in a relatively short period of time. I am so thankful to our friend John who referred us to GCFC.

I’m hoping to have another update soon of Annadelle walking in a walker independently! I am praying it will come soon. Please help me to pray for that. As always, thank you for the continued support.

Until next time…

January 5, 2019 High Hopes

There’s a closed Facebook group I’m in that’s only for parents of kids with AFM. With a bit more than 600 members, we share advice, stories of hope, and a whole lot of questions with each other. Because this disease is so extremely rare, we lean on each other for support.

Last night I was so relieved to read a post from another parent asking the question I’ve been asking myself for what feels like forever now, “Why my child?” This mom expressed in this post all of the frustration I’ve been feeling myself but have been too ashamed to say aloud except to a handful of close friends and family.

I grew up believing I would do big things. I always told my dad I would graduate from UGA and work for Cosmopolitan magazine in New York, but I never even came close. I don’t even know if Cosmo is in NYC, but the point remains that I had some big dreams. Those dreams fizzled away as I battled an extremely abusive relationship that sent me on a course far from what I had imagined. It seems those dreams have only drifted farther away as the years have aged on.

Now, as I sit in the passenger seat on the drive to Baltimore, I wonder if the course will continue to take 180’s. How long will we be in Baltimore? Will it be worth it? Will life always be like this, not for me, but for Annadelle? Will she always struggle as she is now? It’s so hard not to question the future, especially when my track record of making plans and those plans actually falling into place are basically ziltch.

I don’t want you to think I’m Negative Nancy. I can assure you I have put an extra effort into staying positive these days, but I want to be transparent here. I started this blog for other AFM families to read and realize like kinda sucks for us, but there is hope.

So, in an effort to manifest destiny, I will declare now that our journey to Baltimore will be worth it. I know Annadelle will see major gains at KKI, as I have been trusting God to provide Annadelle with a full recovery in order to use her story as a testimony to countless others. There are hundreds of people praying for her daily- praying for complete healing, comfort, understanding, faith, happiness, and so much more- so how could she not be blessed? The word says what we ask for in prayer we will receive. I believe it.

I also believe God shows us His plans through little oddities all around us. Whether it be a quick conversation with a stranger in line at the grocery store or a few words that stick with you from your favorite novel, He speaks to us in ways we don’t always expect.

For me, His reassurance to stop questioning and just trust Him came in the form of a song on the radio. Panic at the Disco’s “High Hopes”

Mama said don’t give up, it’s a little complicated
All tied up, no more love and I’d hate to see you waiting
They say it’s all been done but they haven’t seen the best of me
So I got one more run and it’s gonna be a sight to see

Had to have high, high hopes for a living
Shooting for the stars when I couldn’t make a killing
Didn’t have a dime but I always had a vision
Always had high, high hopes

I guess I’ll take my own advice and trust God that He is working on Annadelle’s full restoration. I’m just going to sit back and enjoy the long ride to Baltimore as Annadelle plays on her iPad and giggles as she conquers another level of Angry Birds.

December 2, 2018 A Pleasant Sunday

Have you ever had such a good day that you feel it necessary to literally say it out loud multiple times? Have you ever said, “Today was a good day!” and actually meant it?

That happened to me today.

My cousin, Robin, and her family came to visit for a good chunk of the day. Robin is more like a sister to me than a cousin and has been there for me in more ways than one through this entire ordeal. I truly don’t know what I would have done without her help and support.

We did not tell Annadelle that Robin, Anthony, Maddie and brother Hayden were coming. We wanted it to be a surprise and use her curiosity of who her visitors were as motivation for participating in therapy. While we didn’t have therapy today, we still made her do a lot of work on her own, such as help getting dressed or “walking” to the wheelchair. When it was time to go see her visitors, we got on the elevator to head to the visitor’s desk and I told Chris, “Uh oh. We forgot a mask for Maddie.” Annadelle quickly picked up on the name and shouted, “Maddie’s coming!?” I really suck at keeping secrets.

During their stay, we ventured outside and even grabbed some Waffle House. We saw Santa for a few minutes, too. After they left, a Christmas parade came by in front of the hospital and Annadelle was able to get a good bit of candy and a stuffed animal.

Robin has not seen Annadelle in person since she visited us in Mobile very early on. I think it was the second or third week in the hospital when she last saw Annadelle and she has made significant improvements since that time. But when we discussed my Facebook and blog updates, Robin pointed out that I only include the “good points” of Annadelle’s recovery, making it appear that Annadelle is much better than she actually is.

I want to clarify this for anyone who cares to know. Annadelle is most certainly better than she was, but she is nowhere near what she once was. First, she cannot walk at all. She can’t even stand up on her own and we have just now gotten her to where she can somewhat bear weight on her legs. Her noodle-like legs can get to a point where she can lock them at the knee to help stand, but without maximum assistance she is not able to do much for herself.

She can’t hold a cup with 12 ounces of liquid. She can’t lay herself down or sit herself up on her own. She can’t brush her hair or put her socks and shoes on. She can’t crawl or even roll over without help. She can’t do 90% of what she once could.

I have spent hours reading over posts and comments from a Facebook group I joined for parents of kids with AFM. Seeing as to how there are only around 430 kids diagnosed with AFM ever, the group is relatively small. Parents each ask for advice and share stories of interviews they have done in an attempt to raise awareness about AFM, and more importantly to encourage the CDC to find a cause and a cure for what is essentially the new polio virus.

One mother whose son is close in age to Annadelle has been making some slow progress with therapy. She shared her worry of her son not regaining mobility and her emotional struggle with his diagnosis with the group on the exact day I was feeling overwhelmed with worry that Annadelle would not return to “normal”. I was surprised at how many parents whose children were diagnosed between 2014-2016 are still regaining mobility and ensured the original poster (and subsequently myself) that recovery from this disease is measured day by day over long periods of time. The recovery is like running a marathon, but my brain is running a 5k.

Realizing the recovery is slow and agonizing, I have learned to appreciate the little things I always took for granted. Snuggles with my baby girl are so much more meaningful now. I spend much less time on my phone. I’m more patient. I try to understand “the other side” and am more sympathetic than I once was. I literally stop to smell the roses.

Today, with Robin and family, I simply enjoyed the company. A chance to go outside. Conversation. Warm weather. Everything I missed out on before. I just hate that it took something so awful happening to my child for me to see what was truly important in life.

I hope if you are reading this post, you take a second to thank God for your many blessings (because, believe me, they are plenty even if you don’t see them). Take the time to appreciate the little things. Because one day those things will be big things, and they will be gone.