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