Monthly Archives: February 2020

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.

February 7, 2020 Moving Along

Seeing Santa at Gulf Shores Family Chiropractic (Full Armor Center)

Life has been so up and down lately that I completely forgot to update Annadelle’s blog! Although progress has been slow, I actually do have quite a few updates to talk about.

Christmas came and went, and now it feels as if it was ages ago. The kids had a wonderful Christmas thanks to the generous giving of two separate church groups who asked if they could help sponsor Annadelle’s Christmas. At the time, neither myself or Chris was working and we were stressing about Christmas. Fortunately the kiddos did not notice and seemed to enjoy every second of all the love, food, and gifts.

During the weeks leading up to Christmas, we took Annadelle to see the chiropractor (as we have been continuing to do twice a week) and she was able to see Santa, too. It was such an emotional moment for me as a parent thinking back on seeing her sitting in Santa’s lap this year versus this same time last year. She has gained so much strength, especially in her core, that she sat up tall and pretty on Santa’s lap as she told him she wanted “lots of Barbies” for Christmas.

Just look at the comparison photo. I mean, really…it is truly amazing.

Christmas 2018 v. Christmas 2019

We also took her to see Chad, her orthotist, during December because her KAFO brace needed to be adjusted. She has gotten a bit taller and the shorter brace was making it difficult for her to walk. Chad said overall her brace looked great, but he adjusted the height of the knee placement about an inch. He said she won’t need to be refitted for another KAFO for another 2-3 months, at which time we might as well do the KAFO and the AFO at the same time.

We will look at a different type of locking mechanism at the next fitting (one that makes unlocking it easier for her to do herself). Right now there are two small rings on each side of the brace that have to be held up while her brace is locked in order to unlock them. She cannot do it herself since it requires using both of her hands (and she needs one hand to hold on to something as she stands). The new mechanism is a U-shaped band that goes behind her knee and unlocks when she touches the back of her knee to a chair or similar object. She can also reach behind and unlock it with her left hand which would leave her right hand free to hold on to the restroom bar, classroom table, etc.

Annadelle at Eastern Shorn Orthotics seeing Dr. Chad and pretending to be a ballerina.

I was blessed enough to find a full time job at the end of January which means Chris has been taking her to the chiropractor and PT/OT twice a week. The updates I get are from him, and y’all know men and women are a lot different when it comes to relaying information. I have to pull the information out of him a lot so I don’t have some specific details to her treatments, but I can tell you that within the past two weeks, Annadelle reached all of her therapy goals and had to re-establish new ones. This is awesome news! This means she is progressing, even slightly, so her new goals have been defined. Unfortunately, I don’t know exactly what those goals are.

I do know that her overall therapy goals are to transfer from her wheelchair (or walker) to the toilet completely independently. This means she would have to transfer, hold on to the bar, remove her clothing enough to use the restroom, and get to the toilet. Then she would have to wipe, stand up, pull her pants up, then transfer back to the wheelchair or walker. She is able to do most of this now with a little help, but we are praying she is able to quickly reach this goal so that she could possibly attend summer camp without an aide (and overall just be more independent).

Annadelle walking back to our car after a visit to Gulf Shores Family Chiropractic (Full Armor Center)

I spoke with school staff this week and we decided to finally transition her to using only the walker at school! If you have been keeping up with the blog, you know this has been a goal of ours since school started so we are overjoyed to be reaching this point. Both the staff (and we) agree that doing this will hopefully give her the little push she needs to stay motivated enough to work to get out of the wheelchair. Because the wheelchair is “easy” for her to use, she prefers not to even try to walk. Kids can sometimes be difficult to convince to do a little more work for a greater reward because they automatically revert to doing the easiest action. This has been the case with Annadelle for several months and she has just not been interested in walking much.

Tomorrow will actually be the first day that she uses only the walker at school. She will sit in a regular chair and transition from classroom to lunchroom to P.E. (etc.) using on the walker. She will probably fatigue easily, especially the first week or so, but our prayer is that she quickly adapts and gains some strength in her legs and core.

Gracye and Annadelle at Cactus Cantina in Orange Beach
Nora, Grayce, and Annadelle at Cactus Cantina in Orange Beach

Annadelle is still on a modified ketogenic diet at the recommendation of her neurologist. As you can see from the photos above, she has slimmed up a bit. It has made a huge difference in her movement and her ability to transfer herself. She is now able to get up on “high knees” from a seated position by herself (although larger distances are a bit more difficult, but still doable). She can also raise her right arm without bending at the elbow. Both of these are something she could not do at my last update in December. She is getting stronger!

I field a lot of questions about Annadelle’s modified keto diet so I think it is important to know she doesn’t just eat cheese and bacon (she doesn’t even like cheese!).

  • Breakfast is usually 1 egg (scrambled) with 2 slices of turkey bacon.
  • Lunch is a variety of proteins, greens, and fruits like apples or oranges. Recently I have been sending her with “surprise” lunches which are a sandwich and chips, but they are few and far between (typically only on Fridays).
  • For dinner she will eat whatever we eat. She likes baked fish, soups, and protein/greens combinations. If she does not like what we eat, I do not make her anything different. This was hard for me to do at first but I have found that she will eventually try whatever we are eating and will like it most of the time.
  • If she snacks, it is typically on a spoonful of peanut butter or a piece of fruit (banana, apple, orange, or sometimes berries). She also likes some nuts like almonds and cashews.
  • She also gets sweet treats occasionally (mostly sugar free treats like a piece of Russell Stover candy or Rebel brand ice cream). We also make her a “mug cake” that is around 4 net carbs for the entire bowl.

Essentially, her carb count stays relatively low (less than 50 net carbs daily) and her protein and fats stay high.

Annadelle’s school recently had this swing (pictured) installed on the playground and Annadelle was absolutely oVeR tHe MoOn!!! She calls it “my swing” and quite literally talks about it every single day. I have been speaking with the school principal about making sure the playground will be ADA compliant and have actually just got back on that this week so I will update later with any changes made to the playground. The Americans with Disabilities Act (ADA) requires that public school playgrounds be accessible for students with special needs. The amount of accessibility depends on the items available on the playground. For Annadelle, my request is for an accessible “floor” that would allow her access to other elements on the playground. Right now the ground is just mulch and could be replaced with accessible-friendly foam flooring seen at many other local parks. For now Annadelle is pretty content with “her” swing, but she deserves to have access to the other equipment.

Hopefully I have been able to cover everything we have been up to since December, but I will be sure to update again soon since Annadelle is transitioning to the walker. I can’t thank everyone enough for their continued support. I hope this blog can be a guiding light to others who are going through the same thing, and give any doubtful parent out there a renewed hope that recovery is possible!