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.