Tag Archives: Acute Flaccid Myelitis

February 25, 2020 Miss Tiffany & Mystics of Aurora

A few weeks ago, I got an email from my friend Eva. I just love her. I really, truly do. She’s honestly one of the sweetest souls I have ever met, and when I say I feel honored to be her friend I am telling you no lie. If you aren’t friends with Eva, you are missing out.

I met Eva when I helped out with the McInnis Charity Gala to benefit Youth-Reach Gulf Coast back in October. As we sat in our friend, John’s, basement putting together beautiful feather plumes, Eva asked me a lot about Annadelle and what our life had been like the past year. The truth is I tell her story all the time (even when I probably shouldn’t) so it rolled off my tongue as quickly as could be. Most of the time, people are pretty interested at first, but lose interest quickly. Not Eva, though- she listened intently and genuinely listened, soaking in all the information I had to offer and responding with the kindest “I’m sorry for what you’ve been through” that I’ve ever heard. It was refreshing, to be honest.

I found out later that Eva is the president of a local women’s Mardi Gras group called the Mystical Order of Aurora, a small organization that gathers for social events and donates a tremendous amount of time to charity work. Prior to helping with the McInnis Gala (which was gorgeous and raised a ton of money for YRGC, btw), Eva and the Auroras had put on something known as the Swanky Gala which also benefited YRGC and were set to host their annual Christmas party in December which would gather and distribute Barbie dolls for girls less fortunate. Pretty awesome, right?

In her email, Eva told me that she and the Auroras wanted to honor Annadelle as their first ever “Miss Tiffany” at their annual Breakfast at Tiffany’s brunch at Perdido Beach Resort. She said Annadelle would receive a crown and a sash, and just be loved on a bunch by all the ladies during the breakfast. Of course I said yes because I knew Annadelle would be over the moon- and she was! She had no idea who the Auroras were, or even what a brunch is, but she sure knew what a crown and a sash was and she couldn’t wait to get them.

Annadelle being honored as the Aurora’s “Miss Tiffany 2020”

Early in February, Annadelle and I attended the brunch all dressed in black and pearls. We went to visit our friend Janna Chastain in Gulf Shores to get her hair and makeup done. Chris has known Janna for many, many years. She does our hair and also does wedding hair and makeup (or in this case, Miss Tiffany hair and makeup). If you’re in the Gulf Shores/Orange Beach area, check her out.

During the brunch, Annadelle received a lot of goodies from Eva and the Auroras. She was less concerned with eating and more concerned with all the goodies she got. She was also asked to ride in the Orange Beach parade representing them as Miss Tiffany, and I don’t think I have to tell you what her answer was (psst…it was an absolute YES).

I was also asked to give a little background on Annadelle’s diagnosis and a quick recap of the past year. I didn’t mind at all, mostly because Eva asked me and also because I think it is important to educate people about this rare disease (hence the reason for the blog in the first place).

Part of Annadelle’s goodies she received from the Mystics of Aurora
Annadelle enjoying more of her goodies from the Auroras

Annadelle was on Cloud 9 after we left the brunch and would not stop talking about the parade. I’m pretty sure she told everyone she came in contact with that she would be riding in the parade. Chris and I had to keep her out of her “Aurora bag” where her crown and sash were being stored until the parade. She wanted to play dress-up and let everyone know she was, indeed, a true princess.

Annadelle posing with the Mystics of Aurora (and a few Marshals) at the Orange Beach Mardi Gras parade, representing the Aurora’s as “Miss Tiffany 2020”

We met up with Jane (another wonderful Aurora) and got set up to ride in the parade. Although I own a Jeep Wrangler, it is not as awesome as Jane’s so we used her Wrangler for the parade. We set Annadelle up with a good bit of beads, adorned her with her crown and sash, and had her practice the “princess wave”.

Chris drove the Jeep as Hayden and I walked beside it, helping Annadelle to throw some beads while also throwing beads ourselves. She could not throw them very far so I spent a good amount of time kicking beads away from traffic or picking them up and throwing them out farther. PSA: THESE FOLKS DOWN HERE GO CRAZY OVER SOME BEADS! (Keep in mind, I’m from right outside of Talladega county where women get the beads in a different way :::cough, cough::: DEGA, BABY :::cough, cough::: but the drive to get beads really was more due to drunkenness than sheer greed, but whatev.) I was definitely not expecting to see so many grown adults getting ugly over some plastic beads, even to the point of taking beads thrown directly at kids from right in front of them. :::insert angry face here:::

Annadelle riding as “Miss Tiffany 2020” for the Mystics of Aurora

Once the parade was over, both kids were starving and “hangry” so we grabbed a bite to eat and just enjoyed the day. It was a breath of fresh air to feel like a part of the community, a place we can truly call home. Being in the hospital and not having much of a social life for so long made us feel very secluded and lonely so it was nice to be able to enjoy the company of new friends (and each other, obviously).

One thing is for sure, I will never forget this day and all of the love the Auroras have shown Annadelle. I know she won’t forget it, too.

February 7, 2020 Crushing It

Take a look at this warrior princess who successfully completed an entire day without her wheelchair!

I have been a nervous wreck all day wondering how well she would do without her chair, but (as usual) she kicked AFM’s butt and crushed it in her walker! She even went to grab some mexican food (and Krispy Kreme, as promised) after school, walking at a pretty fast pace!

We had been praying for this day for so long that it felt so surreal to know it was actually happening.

God answers prayers, y’all.

Also, I spoke to the principal regarding the accessible playground. The school is already in the process of upgrading the playground to accommodate all kids with special needs. The new playground will be constructed over the summer and will be ready for her (and the other students) beginning the fall semester. I’ll update with the progress as it comes.

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.

January 15, 2018 Uncertainty

We had another busy day of therapies today, including acupuncture. Annadelle was much more cooperative today than she was yesterday. I think she may not have slept very well the night before and that may have contributed to her unwillingness to complete tasks assigned by her therapists toward the end of the day.

Today she was able to stay on task for the most part. She’s five, so of course she is easily distracted, but she does a lot better than I would imagine a lot of kids her age would.

Nothing remarkable happened in therapy unless you count our OT telling us that Annadelle’s right shoulder is extremely weak. Initially she thought it could be her core muscles that were keeping her from lifting her arm, but she asked another therapist to watch her and give her opinion. That therapist said Annadelle was definitely having difficulty with her shoulder, meaning we have to continue to work to increase strength in that arm. Our roomies suggested we ask for a consult from the brachial plexus injury clinic at Johns Hopkins so they can “score” her. I don’t really know what that means but I am going to ask about it tomorrow morning in rounds.

I have been speaking with our therapists about the best equipment to keep at home for home therapy so our PT provided us with a list of recommended items. Everything on the list is something that is used at KKI and can be used for sessions at home, something that will definitely help us since our outpatient clinic is over an hour away from where we live. Because of the cost and time of travel, we may have to consider cutting her outpatient therapies down to only a few days a week instead of every day like we had been doing, I had called Encore physical therapy on Canal Road in Orange Beach inquiring about transferring there, but the therapist cut me short and told me I needed to find a “developmental rehab” which I have been told is completely inaccurate. The therapist claimed she was very familiar with AFM, but I think she was confusing AFM with a different disorder. Anyway, hence the reason we are working so hard to have our own home gym.

The Amazon wish list can be found by clicking in the menu of this blog, then click “medical wish list”. I would share the link here, but for some reason the links do not transfer to the site when I am updating a post from my iPad.

Dr. Pardo, a pediatric neurologist at Johns Hopkins, is going to come and visit Annadelle on Thursday. He has treated and followed many AFM patients so I am curious to see what he says. His team has been hounding me about getting Annadelle’s MRI scans to him, but I wasn’t able to easily get them sent from USA Children’s and Women’s Hospital in Mobile where we were treated originally. Eventually his team was able to get them sent over.

Annadelle was scheduled to have her first school session today, but the teacher had written down the appointment time wrong so it began about half an hour late. I was not happy with the session because I clearly explained to the teacher what Annadelle needed to work on. Instead of doing what I asked, the teacher began to teach her about Martin Luther King, Jr. and asked her to read a small book about him. Like, she can’t read, so…not sure what she was thinking there. She was trying to get her to read words like “brotherhood” and “equality.” I eventually interrupted her and explained again that Annadelle could not read yet, that she only had a month of school prior to AFM and it had been hard for us to fit in much school time between medical care and therapies. The teacher then started rushing through the lesson and didn’t give Annadelle a chance to respond when she asked her questions. I ended up asking the nurse to take off education from our schedule which prompted her to call the supervisor. I wasn’t trying to cause trouble by any means, but I didn’t want to pack her schedule full with more stuff that wasn’t beneficial to her. I can do more with her on my own (which I have been doing as I get the chance), like having her practice letter sheets, writing her name, learning her sight words, and counting. I brought some school supplies with us to KKI so we are working with her as we get breaks. It isn’t much right now, but at least it is something. I think we will be able to catch her up before the end of the summer, God willing.

The stickies are placed on each leg above the knee. They are hard to see in this photo, but they are there.

Acupuncture therapy went about as well as I expected it to. Jeff, the acupuncturist, was great with her. He explained that we would be placing the “stickies” (we don’t use the word “needle”) on her spine because that is where the injury is. She doesn’t have complaints of pain much, otherwise he would place the stickies at the site of the pain. But because it was her first session, he didn’t want to begin on her back and instead placed one sticky on each leg. She jumped a little bit at the first one and started to cry, not because of pain but because of anticipation that it was going to hurt. She dried her tears quickly and let Jeff put another sticky on the other leg. She still jumped a little but laughed about it. He kept the stickies in for about 10 minutes before he removed them. He asked if he could come back on Saturday to put some more stickies on and she agreed, so I’d say it was successful even if the stickies weren’t placed here it would be more beneficial.

My boo bear is now snoozing soundly with her doll she made in therapy. I am so thankful to be able to kiss her goodnight, something I was terrified I would never be able to do again.

Thank you for all of the continued support. Without the love and encouragement of friends and family, I don’t know how well we would have coped over the last few months. Your support means more than you know.

November 17, 2018

The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis. 

I think it’s safe to say she feels pretty good.

November 11, 2018

The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis. 

W E E K E N D U P D A T E

➡️ Dr. Merritt is busy down in the PICU so we have a new attending this weekend and remainder of the week (Dr. Goslings). She is working on weening us off the duo tube and methadone. We were going to come off methadone today, but I mentioned her heart rate has been running 130’s-140’s even when she is calm so Dr. Goslings decided not to ween her today. She thinks the high heart rate could be a result of narcotic withdrawal. As far as her tube goes, she is taking all of her medicines by mouth (which she hates because they taste terrible). Now we just have to get her to eat a little more. I suspect they will ween down her night feedings tomorrow and that may help her eat more during the day.

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November 8, 2018

The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis. 

✔️ NG tube out
✔️ IV out
✔️ PICC coming out today 
✔️ Moving out of PICU today
✔️ Snuggle with Daddy

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