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.
I had to take a break from reality today, a little time to just stand at the shore as the waves crashed over and over. It was a time to talk to God and listen for an answer as I closed my eyes and took in all the sounds and movement around me.
How peaceful it was to just be in His presence and soak in the feelings of comfort and warmth. It wasn’t until today I realized I needed that.
We have finally begun to settle into life as we know it. Things are a little rocky now and again, but overall we’re getting our groove back. The days are a lot happier now that our grief has progressed and a good bit of time has passed.
I didn’t even update the blog after the yearly anniversary of AFM had reached us. I thought I would dread that day, but it was just like any other. It’s almost as if I had convinced myself that we were racing time, like if we reached one year and Annadelle wasn’t walking independently that meant she would never walk again. But after all this time I realized that was just a lie of the enemy and there is no cap on recovery. She continues to make progress every day and will continue to do so for many years to come.
I wish I could give you a description of her recovery thus far, but it is really just little things we notice. For example, she can transfer from her walker to her wheelchair by herself, or be in the walker and pull the seat down, then sit by herself. It just continues to amaze me how God is answering our prayers. And although it may be much slower than we have prayed for, God fulfills his promises. Always.
Last week Chris was able to convince a physical therapist locally to take on Annadelle as a patient which will be a huge blessing for us since it is so much closer to home than Fairhope (literally 5 minutes from our house). I have to call and check tomorrow to make sure all of the paperwork is squared away before she can get in for an evaluation, then hopefully get on a schedule several times a week. We will miss her therapists in Fairhope, but the drive there just was not worth it with her busy school schedule.
I’m quite tired so I’ll keep it short tonight. I think there are probably a lot of updates I have forgotten to write about so I’ll write again tomorrow. For now, please continue to pray that our sweet girl will walk independently again. Be blessed.
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 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
My last few posts have resulted in a lot of feedback from friends and family who I think are concerned that I am not dealing with my emotions in a healthy way. I want to assure anyone reading that I am aware I am likely experiencing severe depression, but I am in no way contemplating hurting myself or others. I promise I have not turned to drugs or alcohol, unless you consider a getting high on Christ a problem, in which case I’m guilty. :::wink:::
Seriously though, I want to clear something up. I know there are many AFM parents that read this blog. That is the main reason I created this blog to begin with- I want those parents to know they aren’t alone. I’m in the same boat. I’m crying every single night begging for recovery and healing. I’m so exhausted from moving her around constantly. I’m so unsure if I’m making the right decisions for her that I found myself biting my nails, something I haven’t done since grade school. I’m an absolute wreck. So if you’re a wreck, too, come join my little club. We can be weirdos together.
I want this blog to be as transparent as it can be. I have ups and many, many downs. That is normal. I worry. I’m anxious. I’m eating too much. I’m obsessively searching for stories of hope and recovery. I’m a hot mess. I’ve gone almost a week without a bath at times, but it’s ok. I’m adjusting to life as a special needs mom, and its no where near as pretty as the Lifetime movies make it out to be.
I’m trying to manage the downs by focusing on “work”. My “work” isn’t actually paid work, as my company is a start-up that has yet to make an income. However, I’m passionate about what I do and I will continue to do it whether it produces income or not.
If you’re just now following this blog, or if you’ve been following this blog and you just don’t know me very well, you may not know that I am the creator and host of Skeptical, a podcast that investigates stories of inmates who claim they have been wrongfully convicted. The first season of Skeptical explored the case of State of Alabama v. Daniel Blan who was convicted of capital murder of his adoptive father, Michael Bernos, in 1994. I have been investigating this case for close to two years now and have come to the conclusion that Daniel really is innocent.
Since discovering his innocence, I have been working to find him an attorney to help him file an appeal based on evidence I (along with a friend) collected since the podcast ended. There has been a lot of movement in the case since Season 1 ended and I am now working on Season 2. Season 2 of Skeptical will follow updates in Daniel’s case and will also explore the case of his co-defendant, Tony Quince, who I also believe to be innocent of the crime.
Not long ago, Christina (Daniel’s wife) was contacted by a major television network with an offer of possibly investigating Daniel and Tony’s cases for a popular television program. I contacted the producers of the show and have been trying my hardest to convince them to take this case to prove their innocence. The network would have a much wider scope of resources and, more importantly, funds!) in order to help exonerate Daniel and Tony.
As cuh-razy as it may sound, I have been working with a small group of friends to find evidence of who the real killer actually is. I have a working theory as to who the real killer is, and that person is currently NOT in prison.
Although we have been in the hospital for 5 months this past year, I have steadily been working on this case as I have had the time. While in Birmingham for rehab at Children’s Hospital, I took an Uber to meet with a well-known post-conviction attorney and pleaded for him to take this case. He declined due to his busy work schedule, but he asked that I keep him updated on my progress. I have since reached out to numerous innocence organizations on Daniel and Tony’s behalf. All of them have declined to take the case due to short staffing.
Anyway, I mention this case and my podcast because it is a reminder that although my life came to a halt, the world kept turning. I still have a purpose even if the devil has tried to convince me otherwise. I will never stop trying to find justice for these victims- the deceased, the family, and the two innocent men convicted of this crime.
If you’re interested in finding out more about this case, I invite you to listen to the first season of Skeptical. You can listen for free on Apple Podcasts, Google Play Music, or wherever podcasts are available. Click here to listen online.
I am not sure if I have mentioned that Annadelle’s 6th birthday is this week. My sweet girl will turn 6 years old on Thursday. I have been too stressed with finding her needed equipment that I have not had a chance to plan her birthday party, but I promised her I would work on it tomorrow. She wants to have a swim party so I am going to contact the rec center about possibly setting up something for the weekend after next.
Annadelle has made sure to tell me over and over again that she wants all of her classmates to come to her party. She got really sad today when she told me, “Mommy, I miss all of my friends really bad.” I just took a deep breath and told her, “I know, baby.” I assured her we would see them soon.
I prayed hard last night. I mean, I always do, but something was different about last night. I felt like I was finally being heard despite nothing changing today. I prayed for comfort, understanding, patience, and guidance. I feel as if I am being pulled in 100 different directions and am terrified I will make the wrong decision. I have felt so overwhelmed that I felt forgotten in a way.
But then I opened my phone to find the notification of today’s bible verse- 1 Corinthians 10:13. Over and over I read, “All you need to remember is that God will never let you down.” What a coincidence that this was today’s verse after feeling like God had not been true to his promises.
Here’s the thing, though: I don’t believe in coincidences.
Please continue to pray for Annadelle’s healing, specifically that she will walk again. Thanks for reading. ❤