I don’t know how real bloggers do it. You know, the updating frequently and all the SEO and tagging and marketing and all that? Yeah, I can’t even bring myself to post regularly and keep up with interesting photos…hence the reason this blog is not monetized. But I thought it might be important to give an update right now considering we are living through Coronageddon.
Functioning as a special needs parent during the coronavirus pandemic has me on edge 24/7. My hands are (quite literally) bleeding from washing them so much. My average amount of sleep per night went from around 7 hours before Coronapocalypse to around 4 now. Our teenager is trying to eat everything in the entire house within a 5 day time span. We can’t find any freakin’ toilet paper. I think it’s safe to say we are not okay.
Whether you believe the whole pandemic is a joke or not, please understand that we special needs parents simply can’t afford to take the chance. We’ve spent far too much time worrying about so many other things and adding COVID-19 to the list is pretty damn exhausting, if I’m being honest. Y’all, I’m so over it. I yearn for the day again where I can feel confident that a quick trip to the grocery store isn’t putting my child’s life at risk.
We’re trying our hardest to stay at home despite the fact that I have to work. I am struggling with whether or not to go ahead and take leave in order to keep from getting sick (and thus bringing it home to Annadelle). If I do that, I only get 3/4 of my pay. I am the only person working in my household right now and we are already struggling due to so many rental cancellations after the beaches closed, so I am holding off on decreasing our income even more. Truth is I can’t afford to do it, but I also can’t afford for Annadelle to get sick. It’s a very hard decision. If Annadelle did not already have breathing issues, I would not worry about it so much, but I am just a huge worry wort right now.
To pass the time at home, we are finishing up a few household projects, playing games, swimming, and Annadelle is riding the fire out of her Barbie Camper. We live in a very small house that is getting smaller by the minute during quarantine!
We’ve also been working over at the camper lot to move a few of the stones around and make the yard more appealing. We discovered there was a ton of white rock under the flower bed, so we dug it up and used it to make a path to the outdoor shower. Annadelle helped by digging up some of the rocks.
Because we aren’t able to go to physical or occupational therapy right now, Chris has been trying to get Annadelle in her walker as much as possible while I am at work. I also try to remember to do the STEM on her nightly, but I am so exhausted after making dinner and doing my own school work that I forget a lot.
I also forgot to update that Annadelle celebrated her 7th birthday back on the 14th of March. It was one of our first days in quarantine so we weren’t able to do much, but we did make her a cake and bought her a teepee (she had been making her own forts so we got the tent. It was the best $40 I’ve ever spent on Amazon.). We also promised her that once Coronageddon is over with, we’ll take her to eat and have some fun with a few of her classmates. So far she knows she wants to go eat Mexican food (and if I’m being honest, I sure do miss some cheese dip right about now).
If you’re reading, I’d ask that you say a little prayer for our family. We’d ask that you pray specifically for Annadelle’s healing and that God open doors on Chris’ job hunt. Thanks for keeping up with Annadelle’s story.
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.
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).
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.
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:::
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.
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.
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.
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.
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.
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).
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.
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!
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.