Tag Archives: chiropractic care

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!

November 1, 2019 Halloween, Red Ribbons, and New Therapies

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.

Annadelle dressed up as Princess Belle for a neighborhood cart-or-treat in Bear Point

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!

Annadelle at school dressed up as “Miss Jennifer” (her para professional)
Annadelle and her dad trick-or-treating in Captain’s Cove

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 in her Crocodile walker during the 60 minutes she uses it at school (as a part of her IEP)

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.

Annadelle with her friend Grayce during PE at school
Annadelle with classmates and teacher before her school’s parade for Red Ribbon Week

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 with her friend Haley swinging in the park during cart-or-treat

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.

As always, thanks for the continued support. ❤

August 18, 2019 Alicia

The world lost a beautiful person yesterday. One of Annadelle’s chiropractors, Dr. Alicia Barton, was called to her heavenly home last night after an extremely short battle with brain cancer. The news came to us before church service this morning, and although we weren’t close to her, Chris and I haven’t stopped thinking about her passing since.

The first time we met Alicia was when we pulled in to Gulf Coast Family Chiropractic office and she met us in the parking lot. I thought it was odd that she would do that, the doctor herself coming out to the parking lot to greet us and help us get Annadelle out of the car, but I would soon find out that is just the kind of person Alicia was. That same day, we sat down with Alicia and told Annadelle’s story…again…for what seemed like the billionth time, but the difference that day was that “Dr. Alicia” (as she was called) was truly listening. She heard about her diagnosis, the many months spent in the hospital, all the traveling we had done, and the daily routines we had established. What drew me the most to her was that when she asked about recovery, she asked how we were doing, not just Annadelle.

Dr. Alicia made an impact on our family in the very short period of time that we knew her because she gave us hope. During our first meeting, she spoke healing onto Annadelle and reminded us that our God is faithful.

I believe God puts us in contact with those who may lead us closer to Him, or to those who need to be lead closer to Him. When we met Dr. Alicia, I needed to be lead closer to Him, and He used our encounter to strengthen my faith that Annadelle will be healed. Since we began our chiropractic journey, we have seen remarkable improvement in Annadelle. She is using her left arm more, sitting up straighter, and has a much improved core. I fully believe God used Dr. Alicia (and Dr. Sharkey) to begin the true healing process, of not just Annadelle’s body but also my spiritual soul.

Chris and I spoke about Dr. Alicia while sitting around our dinner table tonight. We both commented that Alicia’s passing has reminded us that, no matter how blissful life is, it can take a turn at any moment. We know all too well just how much life can be flipped upside down in the blink of an eye, but I will admit I never realized how truly blessed we were (and are) to still have Annadelle with us.

Several months ago, Chris and I were arguing over something that neither one of us can remember now. Our relationship is not the same after what we have endured and, to be honest, I think we both want to choke the life out of each other more often than not. I remember this argument specifically because Chris told me I wasn’t grateful for what God had done.

“Are you kidding me?” I thought.

He was serious. He reminded me of the many moments Annadelle was seconds from death as she struggled to breathe, especially on our way to the hospital.

“We almost lost her!” he said, repeatedly.

It was as if the fact had not registered in my mind until that second when I understood exactly what God had done for our family. I thought about myself next to the MRI machine, gently rubbing Annadelle’s foot to let her know I was there, and imagined an army of angels around us. I’ve said before in a previous post that I knew God had performed a miracle in that moment. And although I knew that, I didn’t fully grasp the gravity of what had occurred until I was in the midst of a useless argument with my husband.

I told a new friend at church today that God gives us what we ask for, but sometimes he does it in a way that we don’t expect. I used to pray for patience when it came to Annadelle. God sure enough gave me patience, but not in a way I would want to relive. I would say be careful what you pray for, but I know that God’s plan is much better than ours, even if we don’t understand it at the moment.

I have asked God to completely heal Annadelle. I know that He will in his time. I have had two friends send me random messages to tell me God revealed a message to them- both of them stating Annadelle will walk again in time. That was a few weeks (and one a few months) ago, and yesterday Annadelle walked in her new walker (and braces) from our house to my mother’s two doors down. She can only move straight forward in her walker right now for short periods of time (very, very slowly), but I know she will walk again independently. I can’t wait for the day when she walks in to get her “popcorn” using her walker.

Annadelle on her first day of 1st grade 8/14/19

In the meantime, Annadelle is back at school. She is loving her new teacher, Mrs. Ford, and making new friends. She frequently talks about Laekin and has said she is her “bestie”. From what I’m told, the other kids seem to really accept Annadelle in her wheelchair. I have always been terrified of my child being the target of a bully and the chair increases that fear ten fold. Every night I remind Annadelle of how special she is and how much we love her, and to tell Mommy if anyone is mean to her because she’ll give them a knuckle sandwich.

“You can’t do that,” she replies.

We are currently waiting on Annadelle to undergo a PT and OT evaluation for school before we try to set up more therapy appointments in Fairhope. Because she is on a therapy break right now, Chris and I have been doing as much therapy at home as we can handle. We are going to get the treadmill set up this week with her suspension walker and have her walk on the treadmill for 30-45 minute increments after school. We have been getting her in her walker at home for at least 45 minutes at a time, often times distracting her by going to Nana’s house or playing Donkey Kong on the Nintendo Switch. We need to focus on more core exercises, balancing, leg strengthening, and crawling in the upcoming weeks. I am already exhausted just thinking about it.

Thank you for the continued support. I ask tonight that you pray for the family of Alicia Barton. I also ask that you continue to pray for Annadelle to walk independently. We love you all.

Recent Photos of Annadelle

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…

May 23, 2019 A Snail’s Pace

Since the beginning of May, Annadelle has been in an intense day treatment therapy program at Thomas Hospital, one of only two hospitals (including Children’s) to offer such program in the state of Alabama. She goes to therapy every single day for 4 hours, although she rotates disciplines (meaning Monday, Wednesday, Friday is PT; Tuesday, Thursday is OT).

Her therapists- Lisa and Jessica- have been such a blessing to us during this time. It is so refreshing to know they have not given up on her. They take a proactive approach to her care and are doing a lot of research in to AFM.

At the beginning of the month, Annadelle was unable to use her quad muscles functionally. We could also not feel a contraction in either leg on those muscles. If you saw videos of her picking her legs up, it was the hip flexor muscles you saw working, not quads.

After working with Lisa and Jessica for almost a month daily, taking advantage of suspended treadmill exercises, the therasuit, and the therapy cage, Annadelle has shown progress. She is now able to use both of her quads functionally and we are also able to feel a contraction on both legs. This is a huge step for kiddos with AFM, as many may use the muscle functionally but be too weak to feel a contraction.

With that being said, Annadelle’s legs are still extremely weak. Her core muscles have improved and she is now able to sit herself up from a supine position. This means we are now able to put her in her room or in the floor for longer periods of time because if she falls over she can push herself back up. She still does not use her left arm for much weight bearing, but Chris and I are going to start constraint therapy at home for about an hour a day to see if that helps her left arm. Constraint therapy is where you block off one limb in order to help the other improve, essentially forcing the weaker limb to work harder. Because her right arm is much stronger, she often opts for the easiest way to do something and just lets her left arm dangle even though she is able to use it.

Her therapists have been working to strengthen Annadelle enough that she can crawl, which is a big milestone for her. Although she isn’t able to bear much weight on lefty yet, she still tries to crawl periodically. While I was cooking dinner the other night, I had put her in her room to play with her Barbie house. A few minutes later, I hear, “Help! Help!” I ran through to her room to find her with her legs crossed under her, face down. She had been trying to crawl closer to the Barbie house. She was laughing and said, “Well, I tried!!!” I wish I could express how proud I was of her for trying something so simple. I never imagined I would take crawling for granted when she was 6 years old, but when she gets to that point I can promise you I will never again take it for granted.

Annadelle after church on May 19th. She is sporting her new purple wheelchair from NuMotion. It is much lighter than her old wheelchair and she is able to push herself around fairly well.

This past Tuesday, I had a meeting with the school after I had requested a special education referral for an IEP. I don’t want to post too much about it because the situation is still ongoing, but I will say the meeting was not as bad as I expected it to be.

I ended up hiring a Special Education Advocate to help me through the process and I’m so glad I did. Our advocate, Deborah Jordan, has been a blessing in that she has helped us to navigate the crazy road of IEP. She attended the referral meeting with me via telephone and jumped in when she felt it was needed. She also helped to explain all the terminology after the meeting and what to expect moving forward.

If you are in a similar situation with IEP, I would highly recommend hiring an advocate.

Annadelle’s referral was accepted, so she is now going through several evaluations. Her speech, vision, and hearing screenings were done yesterday. I won’t know what the results of those are until our next IEP meeting where we will discuss eligibility.

Annadelle has also been visiting a chiropractor that came highly recommended to us. Above are some scans that were completed at the clinic because we had concerns Annadelle’s left leg was now shorter than her right. The left leg is the weaker leg and it is not unusual for kids with AFM to have limb length deficiencies after onset. We also spoke to an orthopedist about this and he suggested we have xrays completed to determine if there was actually a length difference or if her pelvis was twisted.

Thankfully, the problem is not a leg length deficiency- it is the position of her pelvis. Her left pelvis is rotated posteriorly and her right pelvis is rotated anteriorly. To combat this, we have been doing stretches with her and also taking her to see Dr. Alicia and Dr. Sharkey, the chiropractors, who seem to have taken a keen interest in her case. They believe that once her pelvis is properly aligned and her left side of her core has strengthened a bit, it will be much easier for her to walk. Right now we have 52 visits lined up and are going about 3 times a week on top of therapy.

We were also blessed recently with an order for a KAFO (knee ankle foot orthotic) for her left leg and an AFO (ankle foot orthotic) for her right leg. I took her to see Chad (the orthotist) last week so he could cast her legs for molds. He will make the orthotics at his office and call me when they are ready.

I am so stinkin’ excited for her to get her KAFO because I think it will definitely help to practice walking and help her strengthen her core muscles. I have basically been stalking pages of my friends whose kids have or had KAFOs and noticed almost all of them saw drastic improvements in core strength. The hope is that when she is standing with the KAFO locking her leg and providing her more stability underneath, she can focus a little more on the core to strengthen it.

We will see.

As usual, thank you for keeping up with my updates. I know they are few and far between now and there is a lot of information I didn’t include in order to keep the post relatively short, so if you have questions please feel free to ask.

Please continue to pray for our warrior princess, as we are moving at a snail’s pace with recovery. We are still believing and praying for complete restoration of her body.