Category Archives: Transverse Myelitis

August 25, 2019

I feel like such an old lady. I missed church this morning because of my back, or more specifically, my right leg. I am in constant pain right now from what we believe is sciatica pain. I am unable to sit in an upright position for long periods of time, so unless Pastor Fred is okay with me sprawling out over several chairs, I missed today’s message. Praise Jesus I have another appointment with Dr. Sharkey tomorrow. Until then, I’m going to be flat on my back with an ice pack and a lot of prayers.

Annadelle in prone position after CPT.

Annadelle stayed home with me because she is fighting off a cold. She came home from school with a runny nose so I have been on high alert. I am constantly checking her O2 levels with a pulse oximeter, checking her temperature, loading her down with vitamin C, rubbing all kinds of oils over here, throwing together a blend in the diffuser (frankincense, lemon, and thieves), running the humidifier 24/7, putting her prone and doing some CPT, and following her around with tissues telling her to blow her nose. I have reached peak paranoid mom.

Annadelle at school (first grade)

Since going back to school, we haven’t been able to schedule her for any therapy in Fairhope. She is scheduled for a quick PT appointment tomorrow so we will know more about a future schedule after that. I sent a message to the special education director for Baldwin County schools this week asking when her PT and OT evals were going to be completed. She said she would forward my email on to someone else and that they would work on scheduling that.

I also asked about plans to make the playground accessible. This was a topic of conversation during all of the IEP meetings we had and I was assured it would be accessible for Annadelle. Her recess is toward the end of the day, so we have pulled up to get in the car rider line and noticed Annadelle away from the other kids under the awning with her wonderful para, Miss Jen (as Annadelle calls her). She has a very small tub with legos to play with. Meanwhile, other kids are on the playground or sitting at benches eating their snacks. I brought this up to Debbie, the director I emailed, because I had specifically asked that Annadelle not be isolated during recess and mentioned the “play box” idea that a few other AFM parents had recommended in the parent group.

I know this may seem petty to some readers, but schools are actually required to ensure a playground is accessible for children with special needs. In this case, it may be as easy as pouring a pad in the playground instead of having mulch, or installing a wheelchair swing, etc. I know Annadelle may be the only child needing this right now, but who is to say other students won’t need it in the future?

School is otherwise going wonderfully for Annadelle. She is understanding the homework pretty well and we are reading every night. I make her read along with me and say the words that she knows. We also practice ABC, number, and sight word flashcards quite a bit. It seems we may have finally gotten into a routine, although having the problems with my back/leg disappear would be fantastic.

I’ve been looking for a job. I’ve applied to approximately 873985738497589374587345897389475893745897348957 jobs and have yet to get a call back from one. I even applied at Target, a job well below my skillset, and got an email saying I didn’t meet their minimum criteria. Obviously, I’ve been feeling like a total failure and am extremely stressed about it.

I did manage to get accepted to Columbia Southern University. I’m trying to finish my bachelor’s, but I switched my major from Nursing to Information Technology & Cybersecurity. After being in the hospital for 5 months with Annadelle, I never want to step foot inside a medical facility again unless I have to. My heart races and I feel sweaty every time I walk into a hospital or doctor’s office, and I think it is safe to say I’m a bit traumatized from the entire experience.

When thinking about what I wanted to swap my major to, I chose IT because I have always had a knack for it and am obviously tech-savvy. Did you know I know HTML and can create databases from code in Microsoft Access? I am self-taught and did all that for fun, which apparently makes me a bit of a weirdo! And to think- my parents told me all that time in the basement on AOL wouldn’t do me a bit of good. 😉

Luckily, all of the classes are online. I have an option to do it at my own pace or enter the term classes. I believe I have 57 credits, but CSU may not accept all of those for an IT major. I’ve been applying for scholarships left and right, some with essays and some not. It’s a full time job just figuring out how to pay for the courses!

Last night I used the HealerTech FlexrGo! on Annadelle’s legs to see if there would be any response. It has been a while since I checked her left leg/foot, and I was unable to get a response on her anterior tibialis or gastrocnemius. I was so bummed because of all the people who had said she had been moving it, but it looks like nothing is there. I did manage to get a small response on her right quad. I am really praying her quad wakes up because she would have much better control in her walker with it. She is able to stand well in the walker (with braces only), but is slow to move around. She is starting to put weight on the left leg just barely. Basically, we have seen great gains from the waist up, but her legs are not making much progress at all.

This is Cami, part of our extended AFM family who was diagnosed in 2016.

I tried to encourage her yesterday by showing her videos of Cami, a little girl whose grandmother we know through the AFM parent page. Cami was diagnosed with AFM in 2016 as complete quadriplegic and has made miraculous progress over the years. She is now walking with a KAFO (no walker). Her story is so inspiring to me and I was hoping it would be for Annadelle, too.

I showed her videos of Cami at Disney World, dancing with her dad and grandmother. Annadelle loved the design on Cami’s KAFO and kept asking if we could fly out to meet her. “We can see Matthew, too!” she said.

Speaking of Matthew, he is undergoing nerve transfer surgery this week in St. Louis with Dr. Moore. Please keep our extended family (Frances, Mike, and Matthew) in your prayers!

I have actually been questioning whether or not we made the right decision to skip out on a nerve transfer. I don’t think her arms need it, as she is continually making great progress with both arms, but I think at least one leg needs some help. Chris is absolutely adamant that we do not proceed with a nerve transfer so the topic has been a source of conflict for us. Chris says that the research will say something like, “7 of 10 patients with nerve transfers showed progress”, but it won’t include any information about the other 3 patients or even progress of patients without nerve transfers. There was a series of podcasts from the TMA about nerve transfers that featured Dr. Amy Moore, the physician we consulted with about nerve transfers, but I did not listen to them. I felt like it would be a biased conversation and our experience with Dr. Moore’s office left a bad taste in my mouth. I felt like we were just a number, and our decision not to do the surgery wasn’t even a second thought from their office. I guess had we at least received a call from Dr. Moore, we may have reconsidered, but overall we just did not feel comfortable with it at the time.

I have been reading on nerve decompression lately, but don’t know enough to really talk about it. It might be an option in the future. I would have to do more research to give more information.

Anyway, I say all that because I’m obviously struggling. Emotionally. Financially. Spiritually. I’m on the struggle bus. I could really use some prayers.

I’d also like to ask that you pray for Annadelle, for complete healing for her and for us to see progress in her legs.

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 27, 2019 The Long Saturday

We’ve had an eventful couple of weeks, some of which I can’t remember if I have written about or not. If I repeat myself, forgive me.

Last week we were visited by several friends from out of town. My friend, Carrie, and her boys (and mother) came down and stayed at my mother’s house (only a few houses down from mine) so we got to see them a good bit. Carrie and I have been friends essentially our entire lives. Our mothers are longtime friends, and believe it or not even our grandmothers were friends. At this point they all just feel like extended family.

One of Carrie’s sons has a rare disease called Tuberous Sclerosis Complex (TSC), a genetic disorder that causes tumors to form all over the body. Carrie and her son spend a lot of time at the doctor and have navigated the world I now refer to as the “sick kid universe”. She has obviously dealt with this world for much longer than I have, and to be honest it was quite refreshing to see someone living a “normal” life with a sick kid. There are so many days I wake up and wish my life was back to normal…because I guess I haven’t quite come to terms with the fact that this is my new normal.

I had another friend in town, also, named Holley. I wouldn’t say she has been so much my friend as she has my husband’s. They went to school together and have known each other for years, although admittedly they were never very close. Holley reached out to us while we were in Birmingham, brought us lunch, and let us know she had been praying for us. She has a daughter close in age to Annadelle and ironically enough they even look similar, almost as if they could be cousins. Holley told me before that when we were going through the worst of it, she would look at pictures of Annadelle and see her daughter, and obviously felt terrible for us. She has been keeping up with our story since inception and told me during a recent lunch date that she has felt a strange connection to us throughout all of this.

I don’t believe believe we meet people by mistake; I know that God places people in our lives to mold us, shape us, and guide us. We learn from everyone we encounter whether or not the experience is positive or negative- it’s still a learning experience. I think God brought Holley to us as a prayer warrior.

If you think I’m nuts, that’s cool with me. I know it sounds crazy when I jump on the Jesus train, but if you only knew the things I have seen happen with my own eyes since October 1, 2018 you may feel differently. I quite literally saw miracles happen right in front of me, like when I watched Annadelle struggle to breathe. Every breath was agony for her, her skin purple and her eyes bulging, with doctor after doctor trying to prepare us for the worst. Then I sat down on a little metal stool next to her while she had her first MRI and held on to her foot so that she could know I was there. I put my head down and felt tears stream down my face and off my nose as I prayed the same prayer over and over again, begging God to save her.

And I’ll be damned if she didn’t come out of that MRI machine breathing on her own, stunning every doctor and nurse in the room.

I have felt God’s presence over my family so many times since our story began. Like the disciples of Jesus, I saw the miracles happen. I read the red letters, just as they heard them. I know the promises. I have the faith.

But have you ever wondered what they felt on that Saturday? You know which one I’m talking about- the day after the crucifixion. Jesus performed miracles as his disciples were there to witness and heard him say he would return. As he died on Friday they knew he would return, but don’t you ever wonder if they doubted it on Saturday?

That’s me at this exact moment. I know the promises, but I feel stuck in the never-ending Saturday. Life is just in limbo. I’m (not so patiently) waiting for what is next, for the big reward.

This is what I spoke with Holley about in detail at our lunch date. I held back tears as we chatted, although I know she wouldn’t fault me had I let them fall. She knows I needed the talk and the reassurance that Sunday is coming.

Fast forward to today. Our friends have all returned home and we’re continuing life in Orange Beach. Going to therapies, doing some school shopping, and just living. There are many days I doubt the promises, but I’m working to keep faith.

Then today I get a little reminder from God after having Annadelle spend a little time on her tummy on a mat that Holley bought her. She wants to get up on the couch with me and I tell her to climb up there. She laughs as she prepares her legs to get her knees under her, then I help her a bit with her arms as she pushes her legs up into “tall kneel”.

She hasn’t done that before.

Showing off “tall kneel” as she got down to her bed.

Y’all, I cried. I laughed and clapped and cried. I wish I could have taken a snapshot of the smile she gave me, like she was so proud of what had just happened and the realization set in that she could do it. It wasn’t perfect, but it was that little push we needed to know that everything is going to work out in the end.

She will walk again; I can feel it.

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.

May 14, 2019

I know, I know. It’s been a HOT minute since I updated. But listen, I’ll be very frank about this- I haven’t been in a good place.

Once we came home and began to adjust to life as we now know it, I lost myself. I guess you could call it depression, but it felt like so much more than that. Being lost. Hopelessness. Neglect. Immense sadness.

Imagine writing in a notebook or a journal. Think about your day and write it as it was. “I went to work, then I came home and made dinner.” The next 52 sentences are written to chronicle what happened in your day. The next line becomes just that- only a line. It doesn’t stay straight, but it strays from where it should be and before you know it your pen is all over the paper, a tornado of ink flooding what was once a well thought out description of what you did that day. Now you can’t read what you wrote. All you see is black.

That’s what my life has felt like since October 1, 2018. A swirl of black blurring the images of what life should have been.

Through a lot of prayer, I’ve managed to bring myself out of that hole, at least for the most part. There are still days where I struggle to maintain a smile or be joyful. I think that is to be expected.

Since my last post, there hasn’t been much that has happened. We are just continuing to live our lives and work on Annadelle’s therapy.

This past week we started an intense day treatment program at Thomas Hospital where Annadelle has been attending PT and OT three days a week, but now it is every single day from 8am-12pm. If I’m honest, it’s kicking my ass. I thought initially it was because I am not used to getting up so early, but I now think I can attribute most of my general feeling of being tired to a low carb induction which I began May 8th. This is known as the “low carb flu” that sometimes results as your body excretes excess sugars in order to use fat for energy rather than carbs. Since I’m almost through the first week, I’m know that sluggish feeling will go away soon.

Chris also bought me a car. It’s a Jeep Wrangler and I absolutely love it. However, as our luck would have it, the engine went out on it the day after we bought it. And of course we bought it from an individual so we thought we were screwed, but alas God stepped in and made it right. The guy who sold us the car ended up sending us money to fix the engine, so we weren’t out anything. Chris ordered an engine and has been putting it in for the past week and a half by himself. He used to work as a jet mechanic so he has a basic knowledge of engines and whatnot. Praise God for that, as the labor costs would have been twice the amount we paid for the engine.

Easter was hard for me. I have always enjoyed Annadelle running to grab Easter eggs with her cousin, but she wasn’t able to do that this year. We decided to take her to the beach and put her on a sled we have and pull her around to find the eggs on the beach. We invited a few friends to come but they all declined so our Easter was rather lackluster. It just made me realize how much she isn’t able to participate in now which made me feel so much worse.

That feeling has improved slightly since Annadelle was able to get her new, lightweight wheelchair. She moves herself around a lot more now, especially around the house. It obviously doesn’t help at the beach or at a playground, but we are steadily praying that we need some major improvements with therapy.

As of the end of last week, Annadelle “walked” on a treadmill at therapy. She was in a harness with virtually no weight being placed on her lower extremities, but she was moving her legs in a walking motion without the help of anyone. I posted a video of this on my personal Facebook page that I hope to upload to YouTube soon for our readers to see. I’ll update when I get all the videos uploaded. Her therapist, Lisa, and myself were completely shocked. She had never gotten on the treadmill and moved her legs as she did. It was the first day in a long time that I felt a true sense of hope that she will one day walk again.

With that being said, Chris and I decided against putting her through a nerve transfer surgery. The short reason is because we just didn’t feel comfortable about it. If we change our minds, we’ll call Dr. Moore’s office to see if we can reschedule, as her surgery was scheduled for May 22. When I told Dr. Moore’s office we wanted to cancel, they didn’t ask why. A simple, “Ok, thanks,” and the conversation was over. It made me feel like my kid was just a number and they would move on to the next without hesitation.

I’m sure there’s a lot more to update about since I’ve been MIA from the blog for so long, but I’m exhausted and ready for a good night’s sleep. I just wanted to hop on with a quick update and a thank you to those who check on us periodically. The days and weeks following trauma are hard, but the months after are much harder. Reality sets in and you are often forgotten, so I just want to say a special thank you to those who have continued to keep our baby girl in your prayers. Our journey is far from over.

March 14, 2019 Annadelle Turns 6

Although we didn’t do much today, Annadelle said she had a great birthday. We slept in a little bit and spent most of the day hanging out.

My mother-in-law, Dorothy, drove in from Alexandria and will be spending two nights with us. Annadelle was excited to see her Granna but asked where Eli and Asher (her cousins) were. Granna explained that they couldn’t come because they had school. Annadelle has no idea that they are going to surprise her next weekend when they show up at her birthday party. A few other members of our family including Maddie and Woods, two more of Annadelle’s cousins, are coming in from Calhoun county (5 hours away) for her party on the 23rd.

She had a lot of friends send her video messages wishing her a happy birthday. She’s about like I am when it comes to getting attention or receiving compliments. When told, “Happy birthday!” she usually replies with, “I heard you.” 😂😂😂

Annadelle was super excited to see this beautiful yard sign display outside of our house this morning! A friend of mine has a friend who runs Sign Gypsies, and that friend had contacted me about putting up the display. Apparently she had been following Annadelle’s story and wanted to do something special for her. Things like this are so thoughtful so I hope some of my readers will check out her services. Please give her a call if you want an adorable display like this for your kiddo or special event!

Annadelle has asked that I make her a birthday cake, not buy one. Of course I couldn’t turn down her request. She was able to help decorate with the sprinkles.

She also received many packages today from friends far away. She spent a lot of the day playing with all her new toys and riding her Barbie camper that she got for Christmas.

For dinner Annadelle requested that we eat at Desoto’s because she said they “have good chicken and fries.” It is about a block from the beach so we walked over to the handicap access mat in Gulf Shores and let Annadelle put her feet in the sand. Since being in the hospital for 5 months, it had been quite a while since she had visited the beach. When she put her feet on the sand, she told her dad, “I want to walk.”

On the ride home, we drove by Annadelle’s school since Dorothy had never seen it. When we passed the fire station, Annadelle told Dorothy, “We went on a field trip to the fire station. That was when I was walking.”

I had to hold back tears as I listened to her say it very matter-of-fact. It almost felt like she didn’t think she would walk again, like stories of before the hospital are “when she was walking” and the present day is “now that she can’t walk”. I am still praying every night that God touch her, heal her, and let her walk again. It is to hard to have patience when you are waiting on God’s time. Meanwhile, she’s missing out on so much.

I told her we wouldn’t do therapy today since it is her birthday, but I thought having her sit on a peanut ball wouldn’t be too much work once we got home. She wasn’t able to sit on the smaller ball we have a few days ago but she did well on the larger blue one. I put cushioning around her to make sure she didn’t hit her head if she fell, but she was able to hold herself up relatively well. Eventually we turned her around and put the coffee table in front of her and she did even better. I am hoping time on the peanut ball will help to increase her core strength through balancing and also her legs from keeping her stable.

Tomorrow she has a doctor’s appointment in the morning and her first pool therapy at 1:45.

Please continue to pray for our precious girl that she may strengthen her core muscles and her leg muscles so that she may walk. It is my constant prayer.

March 13, 2019 Birthday Eve

Tomorrow is Annadelle’s 6th birthday.

She is so excited about her birthday and her party that I have scheduled for the 23rd. We decided to do an indoor pool party for her so that she will hopefully be able to interact more easily with other kids. She moves more freely in the water and I’m excited to get a bit more therapy in while she’s having fun.

My mother-in-law is coming in to town tomorrow for Annadelle’s birthday. Right now our plan is just to bake cupcakes sometime during the day and possibly go out to eat as a family at night. When given the opportunity to choose any restaurant, Annadelle said she wanted to go to Chick-fil-A.

As far as therapy, we have been continuing going to Fairhope each day. Her therapists have told us (basically) that we need to focus more on her core strength than we do her legs, because if she does not have enough core strength to support herself, she can’t walk.

Our goal is to continue putting her in the stander and using the knee immobilizers. We are now going to incorporate a lot of time on the floor to practice rolling and balancing. Exercises like partial sit-ups and reaching is going to help increase the strength in her core, and hopefully she can walk soon after that happens.

I am not overly impressed with the facility, but there is nowhere else closer to us that will accept her as a patient. Thomas rehab is not set up for kids with severe spinal injuries. We have decided to drop her rehab from 5 days a week to 3, possibly 2. We are going to replace those missing days with swimming at the community center. It will be a lot of work on us, but traveling to Fairhope each morning takes the majority of our day so we aren’t able to get as much in at home as we would like. Right now time is precious to us. I’m praying we are making the right decisions to ensure she is able to have as much recovery as possible.

I received a call today from one of the neurologists at Children’s of Alabama who is requesting that we come back to Birmingham so that the neuro team can see her in clinic. They also want to do another MRI and place her under anesthesia. I asked what their reason for a repeat MRI would be and was told it will help them to determine what kind of recovery she will have.

For some reason this phone call infuriated me. Almost every single doctor we have spoken to, with the exception of Dr. Pardo at John’s Hopkins Hospital, gave us conflicting information about AFM and recovery rates. Many doctors simply don’t know outcomes because there is not enough information to provide accurate statistics. Many, many, MANY of the doctors we have spoken with base predicted outcomes on outcomes from patients with different diseases, not AFM.

The truth is this neurologist that contacted me today wants us to have an MRI because Annadelle’s diagnosis is so rare that a repeat MRI offers a valuable learning experience to the team. I am simply not willing to put her through yet another MRI, needles, or any additional time in the hospital that isn’t absolutely necessary for her recovery.

Besides, Dr. Pardo already told us he believed she would make a full recovery, so what would happen if these less experienced doctors told me something different? I’d be an absolute wreck, that’s what would happen. I’d much rather continue to put my trust in God that she will walk again. Chris agreed.

Prior to therapy today, I met with Jeremy, a rep from NuMotion, and Patty, an employee of Children’s Rehabilitation Services in Mobile. We had the meeting in order for them to measure her for a wheelchair and to complete a quick exam to see what she could do and what she couldn’t.

We decided to order her a Ti Lite Twist manual wheelchair. The chair is the exact same one she used at KKI and is light enough that she can easily move around in it. When compared to the other chairs, this was will allow her to grow width-wise and length-wise over the next three years which is the amount of time the wheelchair will need to last (at a minimum) before our insurance will pay for a replacement (unless there is a problem with the chair, in which case it is under a warranty).

She will also be getting the SmartDrive power assist option that will allow her to go long distances. She can push her wheelchair a bit, but she tires out very easily. The SmartDrive will make it easier for her to get around school when she goes back or even help on a simple trip to the store. Check out this link for more info about the SmartDrive. There are also videos at that link to show how it works.

Shelves in her room feature artwork that she created at KKI.

In preparation for my MIL arriving tomorrow, my mom helped me to get Annadelle’s room cleaned out and organized. She had received so many toys and gifts in the hospital that we literally did not have enough room for everything. We have been going through stuff to donate (from our entire house, not just her room) and ended up with two large carloads that my mom and I took to her church’s manna house today to be distributed to locals who are in need of those items.

We will continue working to gather her needed therapy items so that her room can be converted into a small gym. Many of our friends have purchased several items from our Amazon Wish List to help us with these items, and for that we are forever grateful! We are still looking for several items from our list. I have been scouring Marketplace and Craigslist to see if I can find any equipment used, but so far I haven’t had any luck.

I can’t thank our friends and family (and even strangers!) enough for all of the support you have offered over the last several months. Please continue to pray fervently for our sweet girl that she will walk again. I would give anything to see it happen.