I know it has been a few days since I updated. I had a project I was working on prior to Annadelle getting sick, so now that I have had a little bit of time to continue working on that, I’ve been lax with updating the blog.
Annadelle has continued to make slow progress in PT and OT over the last few days. She is now moving all of her limbs at least a little bit, but she is still unable to move her left foot. She can wiggle two of her toes on that foot, but there is no action at the ankle or for “pull up” and “pedal down”.
Prior to today, we we worried that she was not engaging her shoulder muscles on the right arm (the muscles that would allow her to raise her arms over her head), but an exercise done today by Miss Holly showed she was indeed engaging those muscles.
From what I understand, as long as Annadelle is engaging the nerve, it is up to working the muscle and strengthening it in order for her to move like she used to. I could be wrong on this so take that with a grain of salt. Truth be told, I haven’t asked many questions for the simple fact I know God is going to fully heal my sweet girl. I’m not sure how to explain the peace I have over the entire situation. I am confident in His power.
Today in PT, Annadelle sat on a swing and pushed her legs to swing herself. The best comparison I can make would be like her sitting on a porch swing where her feet could touch the ground, then pushing the swing back and forth with her legs. Her trunk balance has improved a lot but she is still considered a fall risk. During her time on the swing, she sat up by herself and maintained her balance. We also utilized the gait trainer and practiced “walking”. Miss Ann Claire helped her to go through the walking motion. Annadelle would our weight on one leg, pull up on the opposite leg and step forward, then transfer her weight to that leg. She continued this for a few feet with Miss Ann Claire’s help. I’m not able to take photos or videos in the gym since other patients are present, but we saw a drastic improvement walking here than a week ago while at USACW. We are praying that she at least has enough strength to walk with a walker before we leave here, but we have a long way to go before that happens.
Chris’ mom, Dorothy (or “Granna” as Annadelle calls her) came to visit for a bit this afternoon. She brought us some home cooking. Chris and I have said we never, ever want to eat out ever again after we get home. We have eaten out for 2 months straight and we are over it.
While Granna was here, we ventured around the hospital as is our routine after PT/OT now. We also took a ride over to Children’s Harbor to play some games. We had Annadelle practice using her left and right hand/arm playing air hockey and she did well with it. She complained about using her left side after only a few minutes. She said it didn’t hurt so we suspect she is growing frustrated about not being able to use it as she used to. Hopefully that will get easier as she uses it more. We had considered using “restrictive therapy” by putting the no-no on her right arm to encourage her to use her left, but Chris and I are both worried about her losing any use of her right arm from it not being used.
Chris had mentioned that during a time when I wasn’t in the room, Dr. Davis had mentioned the possibility of all three of us staying at the Ronald McDonald house and coming over to the hospital for PT/OT on an inpatient basis. I am wondering if he meant us coming on an outpatient basis and Chris was just confused. I am going to ask him about it tomorrow just to clarify. We would love to be able to do that so that Annadelle could actually get out of the hospital for a while. During our nightly strolls around the hospital, she always asks if we can go to one of the restaurants nearby. We have to explain to her that she can’t leave the hospital every time. Luckily, at this hospital, you can travel about 7 blocks without every leaving the building. Each of the buildings are connected by tunnels so she is able to get around and experience a little bit of what “normal” life is like.
While we are excited about the possibility of going home soon, we want to ensure Annadelle receives the absolute biggest amount of inpatient rehab she can get. She is obviously benefitting from it and it is our belief she will continue to improve at a rapid pace as long as we can continue to have at least 3 hours of therapy a day. Without patient rehab, she would only get an hour a day three times a week- a drastic difference from what she is getting now.
With that being said, even when she is not in the gym, Chris and I are always working with her to engage her muscles. We do a lot of bed exercises and are always encouraging her to use her muscles or to do the most she can do. It may be something like wiping herself in the bathroom or putting on her own sock. We make her work as much as possible. Dr. Davis mentioned that, in his experience, patients with the best recoveries typically have very active parents who are encouraging their children to do as much on their own as they can.
Our sweet girl is improving but she still requires maximum assistance from us. I’m so thankful that we both have been here. I know I would not have been able to handle this on my own.
Please continue to send up many prayers for this princess of ours!
I used to be able to sit down at a keyboard to journal with the words flowing freely from my head through my fingers. It seemed so easy to me, to be able to write out all of my thoughts to properly express exactly what I was feeling as I dealt with my juvenile struggles on LiveJournal back in the late 1990’s.
Today, that task is not so easily accomplished as I attempt to document Annadelle’s progress and recovery of acute flaccid myelitis. I never imagined myself being in the position to write the words I am writing, to tell thousands of internet users that dealing with a child fighting an extremely rare diagnosis is terrifying in more ways than one.
I find myself answering the same questions over and over. “Will she recover?” “What caused this?” “What is the cure?” The answer is simply, “I don’t know.” And not only that, but they don’t know, either. “They” as in “the medical professionals” have no idea the answer to any of those questions. And here I am asking God why He ever allowed us to be in this situation. Why me?
I’ve thought long and hard about the answer to that. Why, of the few hundred people going through this same thing, was I chosen to tell this story? I’ll tell you why.
Because my story was written long before I was born.
Truth be told, I have been planning this post for a while now. I originally wrote this story in a handwritten letter to my pastor as I sat in the PICU in Mobile. It was the early hours of the morning (or late hours of the night, whichever you prefer) when I sat down and put pen to paper, pouring out my testimony to the man who helped bring me where I needed to be in my spiritual journey.
Let me warn you before you read any further: This post is drenched with God talk, church speak, and frank spiritual craziness. If you aren’t a believer, this post may rub you as raw as shorts rub my thighs in summertime. You’ll roll your eyes, exit right on out of this blog, and forever see my writings as coming from “that weird Jesus lover on Facebook.” Let me tell you, that’s a-ok in my book. It may not be your time to soak in this testimony, and that’s alright. When it’s not our time to open our hearts to God, it’s just not our time. I will never force my beliefs on anyone, but I will speak the truth about God’s power. And it just so happens I have an amazing story to prove it.
This story actually starts way back in 2006. I was 21 years old, holding down three jobs and surviving on Yellow Jacket pills and Red Bull. During the day I was working at a local bank as a teller. I’d leave there around 5:30pm and head to my second job waiting tables. I’d sit in the parking lot before my shift started and smoke a little marijuana before heading in to work for the night. This wasn’t unusual- all of my coworkers did the same thing. We were serving six ounce sirloins and Bud Light high at kites, giggling in the kitchen as we ate the bowl full of chicken tenders that were about to be discarded for the night. I’d leave my second job around 11:00pm to midnight and drive over to my third job at a little dive bar close to my home. I’d bartend for a few hours, shoving my tips in my bra on the way out the door. I’d leave the bar around 3:00am, grab a few hours of sleep, and head back to the bank with a fresh face the next morning. I kept this routine almost every day except Sundays when I’d go with a friend to another bar, the only one opened on Sunday, to play poker until the wee hours of the morning.
As you could expect, this lifestyle took a toll on me emotionally. I craved attention not only from my friends, but from strangers. There were many nights I would leave the home of someone I barely knew and call my dad to admit most of the horrible things I had done that week. I’d cry on the phone as he listened patiently, never making me feel as horrible as I felt I was. Even with all of the mistakes I was making, he made sure to let me know I was still loved unconditionally. He and my mom would always be there for me no matter how awful I was.
Looking back on it, I think my dad probably kept a lot of the secrets I spilled while drunk or high between the two of us. I told him things that I don’t think I ever really admitted to myself. I knew he supported my uniqueness, my nerdy quirks and all, and I always felt comfortable telling him things I wouldn’t share with even my closest friends. He was my hero in the true sense of the word.
I spell all of this out to make you understand that my dad wasn’t just my dad, he was my best friend. I knew that out of everyone on the planet, he appreciated my misfit, artsy-fartsy self and the fact that I never did or would fit the mold of an all-American girl.
At the end of 2007, I met my husband, Chris, at the same bar I was working. We hit it off quickly and were married less than a year later. He was a bit older than I was, previously married with kids of his own. I guess he helped me mature a bit, although my mother would probably say I’m far from mature. After I met Chris, I quit waiting tables and working at the bar, but I kept my bank job. I eventually moved up within the company and started making more money. I tried my hardest to move up in the world of finance, but the truth is I never fit in. I’m not the professional type. My ripped blue jeans and Amy Winehouse t-shirts don’t exactly qualify for casual Fridays, if you get my drift.
Chris and I eventually started entertaining the idea of going to church. He had previously been involved heavily with a church during his first marriage. His parents were active members in their own church and taught both of their children the ways of the church. My family was Christian, but my parents never forced me to go to church or attended on a regular basis. The only recollection I have of Sunday School included extreme anxiety and what would probably classify as a panic attack as my mother tried to encourage me to meet new friends. After that, we really only went to church on Easter and Christmas.
February 15, 2009 is the day I confessed with my mouth that Jesus Christ was my Lord and savior. For those unfamiliar with Christianity, we refer to that as the day we were “saved”. Saved my grace, saved by mercy, and saved by unending love. On that day, I had been to church and heard songs of worship led by Anthony Evans, and for some reason my heart pulled me right out of my seat and to the front of the church, out in front of hundreds of other believers. It was one of the first visits Chris and I had made to church after briefly discussing our visit. He, too, renewed his faith that day as we were both baptized in the Holy Spirit.
As I left church that day, I was on a spiritual high. I felt invincible, like nothing could harm me as long as God was with me. That’s what the preacher said- no weapon would ever prosper against me as long as I had Jesus. Nothing could touch me.
Less than a week later, with my spiritual high slowly fading, I received a call from my mother telling me my dad had been diagnosed with lung cancer. I remember standing in the restroom at the bank with my hand held over my chest as I tried to soak in the information she had just given me. “It’s the size of a small sauce place,” she had said regarding the tumor in his chest. I heard the words, but I did not fully grasp what she said. And I didn’t for a long, long time.
Lung cancer is a disease that takes more than just your health. It tarnishes memories. It breaks families. It slashes through your wallet almost as much as it does your heart. The worst part is that it works quickly, barely giving you enough time to catch your breath as your loved one takes their last. It is something I would never wish on my own worst enemy.
As the realization set in that my dad was quickly deteriorating despite treatment efforts, I got on my knees and begged God to save him. Please, God, don’t do this to me.Why are you doing this to my family? What have we done to deserve this? You can stop the pain and suffering, so why don’t you? I begged for hours on end until I cried myself to sleep.
A week later he was dead.
May 20, 2009 is the day my life was put on pause. I am telling you no lie when I say I don’t remember many of the months surrounding my father’s death. The memories are all a blue with the exception of a few bad ones, like arguing with my siblings over which photos to display at his funeral. I remember watching my mother melt into her bed with sadness. I was sad, too, but more than that I was angry.
I was angry that I had taken a leap and trusted my heart to God. I gave Him all of me, something I thought meant something, but He tossed me away like rubbish along the median of an interstate. God didn’t love me.
For years after, I discovered an unsettling pattern. Each time I went to church, something horrible would happen immediately after. Whether it be the loss of a loved one, a promotion not seized, trouble in my marriage or with my stepchildren, fertility problems- it didn’t matter. God was telling me I didn’t belong in His house. I convinced myself God hated me. He would punish me stepping into His house with unimaginable pain, so I stopped having the nerve to go.
Fast forward many years later to 2017. My dear friends Matthew and Amanda invited us to visit a church they had been attending and seemed to enjoy. They didn’t even fully get the invitation out of their mouth before I said no, explaining that each time I went to church, something awful would happen. They looked puzzled as I explained my theory, but still they insisted. Week after week I would receive another invitation until I finally agreed to go. I would go to appease them, but I wouldn’t put forth much more effort than that. I figured if I didn’t open my heart to God, I’d be safe. I’d go to one service just so I could say I went, then maybe they would quit asking.
The first time I stepped into Cornerstone Church, my spirit changed. That bitterness I had held on to for so many years seemed to just melt off of me. I felt welcomed, warm, but most of all loved. I listened to Pastor Mike and it was as if his words were directed only toward me. He put his message in simple terms that I could understand. As I looked around the sanctuary, I saw a mix of people from all walks of life. Some were in their traditional Sunday best, but many looked as disheveled as I felt, like they were living the life I had led a decade earlier. Tattoos, wacky hair, ripped jeans and Converse all caught my attention. Everyone was welcome here, including me.
The next Sunday I came to another service, then another, then another. Eventually I started coming on Wednesdays to small groups, one being a Foundations class. This is the class where you truly begin your spiritual journey as you discover you spiritual gift (or gifts). Everyone has a spiritual gift and this class aims to identify it, then direct you in how to put it to good use. During my time in Foundations, I discovered I had two spiritual gifts- mercy and exhortation.
Over the next year, I became very involved at Cornerstone. I surrounded myself with people that helped to shape me into the person I have become today, someone drastically different than the person I was in 2006. I began to study the word of God and make a conscious effort to live a godly life. Sure, I made (and continue to make) mistakes as we all do, but I learned something so valuable that I wanted to share it with you today.
Just like I had expected, something horrible happened shortly after I stepped foot in church again. My grandmother, Nadine, had been diagnosed with lung cancer, the same horrible disease that had stolen my dad from me. I knew from experience that her time was limited. But this time, instead of getting angry with God, I sought comfort in Him.
My time at Cornerstone, and subsequently my time studying the word of God, had taught me that God didn’t hate me. It wasn’t God that had stolen the joy from my life. That was Satan. Satan, not God, had attacked me time and again every single time I had tried to connect with God. This was Satan’s way of deceiving me into believing that I wasn’t loved, that I was unwanted and unimportant. He tricked me into walking out of God’s house, but God always brought me back. Every time God would tap me on the shoulder and invite me back to His house. He placed specific people in my path that would help me the understand the word of God as it is meant to be interpreted. He knew that weapons would form against me, just as my former pastor had said, so He kept placing me in situations that would lead me back to where I needed to be in order for Him to prepare me for what was coming.
Over the last year, Chris and I have spent a lot of time trying to realign our lives with what God has wanted us to do. he helped us to start embracing a minimalist mindset in order to rid ourselves of all the junk we had and focus on a more simple, intentional life. We finally made the decision to relocate and once we did, God set that plan in motion quick, fast, and in a hurry. Before we knew it, we found ourselves in Orange Beach. We enrolled Annadelle in school and spent most of our day cleaning out junk and selling what we didn’t need.
Chris spent a lot of time in prayer and told me felt that God was telling him to “stand still.” I thought, Huh? What do you mean “stand still”?How are we going to pay our bills if you don’t work? We can’t just stay at home all day every day and survive. We fought over this for many weeks. Our savings drained and drained and drained until finally there was nothing left. We put a lot of money on credit cards buying groceries or items we needed. I had no idea how we would pay our bills, but still he insisted that God was telling him to stand still. I simply didn’t understand it.
At the end of September, Annadelle developed a slight fever and began complaining of a headache. This eventually led to a diagnosis of an extremely rare condition called Acute Flaccid Myelitis (AFM). A polio-like illness affecting an increasing number of (mostly) children, AFM inflames the spinal cord and blocks messages from the brain to being sent to the rest of the body. AFM often paralyzes its victims and sometimes causes vital organs such as the lungs to shut down.
During our time at the hospital, I have been asked countless times how we have been able to endure this ordeal as we have. The answer is easy: God prepared us for this exact moment. He knew we would be here questioning His goodness and grace. He knew we would cry until there were no tears left. He knew we would experience unimaginable pain, worry, and anxiety about the future. He broke us down to our bare bones so that this story could be used to bring others closer to Him. He gave us a test to see if we would leave on Him in our time of need just as the apostles instructed. He told us to keep our eyes on Him in our time of need and we did. As a result, He is giving us the desires of our heart, the desires we have asked for in prayer fervently.
God put me in that sanctuary that morning so that I would be led to Foundations. He knew that I would be sitting here today writing this post, using my spiritual gift of exhortation to write and record this testimony.
Prior to this, I felt like I had been through a lot in my life. I have lost loved ones in a horrible way, I’m a survivor of domestic violence, and somehow I survived my 20’s relatively unscathed. I’ve been through Hell and back in a sense that I’ve had to consistently ward off Satan’s trickery, but it is paying off in the end. Through faith, we’ve experienced miraculous healing as only God can provide. Sure, we have a long way to go, but I’m not super worried about that. I have a peace over me about Annadelle, a peace I’ve prayed for over and over. God has granted me that, just as He will grant her a full recovery. We are praying and believing for complete healing because God has told us in Mark 11:24 “Whatever you ask for in prayer, believe that you have received it and it will be yours.”
I know there will be some that read this post without fully understanding the truth of God’s power. There will be those who read and doubt that God will always provide, protect, and heal. There will be many who dispute the grace of God and instead credit medical professionals for her healing, and that’s okay. I know God uses the gifts of others to help perform his work, and we are forever grateful to the medical teams that have provided her care, but we know better than to put my full trust in man. We put our trust in God, and for that he has rewarded our faith.
If you are on the fence with your faith, or at a crossroads in your spiritual journey, I’m throwing a pebble. A little grain of direction to a place of peace and tranquility. A mark on a tree to help you find your way. Allow me to be your Matthew and Amanda, to open the door for you to take a step and discover what it means to be truly loved.
Today was Annadelle’s first day doing PT and OT straight through for 3 hours. We started at 9:00am and ended at 12:00pm right in time for lunch and I have to say I think she did very well.
Yesterday, PT Anne Claire had Annadelle doing things like log rolls, sitting up trying to do criss-cross applesauce, and getting on her belly which wore her out pretty well. Today’s PT (Lord bless me, I can’t remember her name) had Annadelle doing even more including crawling to get a toy and supporting herself on her hands and knees. She obviously can’t do any of it by herself, but she helps while they do most of the support. The intention is to “wake up” her muscles that she hasn’t used for so long- to remind the brain to tell those muscles to move- and strengthen those muscles so that she can eventually do all of this on her own.
She has made significant improvement since we have been here only a few days. She honestly dreads going to the PT gym, but overall she is much happier here at Children’s. There is much more for her to do and she gets a good bit of freedom here. We spend all of our extra time exploring the hospital or going to Starbucks to get pink cake pops. There’s no telling how much we have spent on cake pops over the last few days.
Annadelle has been taken off of PEDS service and is now exclusively rehab. This is wonderful news. It means medically she is doing great and now can just focus on her PT and OT. She is still being weened off steroids which can take a while. They lower the dosage once a week.
The only bad news I have to report today is that she has developed the beginning of a pressure sore under her left ankle. All this time in the hospital, Chris and I have focused a lot on making sure we turn her to avoid pressure sores. Last night I meant to put some pillow boots under her feet but fell asleep and forgot. Annadelle had asked that I take them off for a bit because she was hot and we both just fell asleep. When we woke up this morning and I checked all her pressure points, I noticed the redness under her ankle. It has not broken the skin but it is sore to the touch. I asked the nurse for a Mepilex and covered it while in PT/OT and then put the pillow boots on her for a while. We will have to wear her multi podus boots once her pressure sore heals, so we are making sure to baby it in the meantime.
Annadelle was *so* excited to see some of our family during a visit today. Chris’ sister, Heather, her husband, Lee, and their two boys, Eli and Asher came to visit along with Annadelle’s older brother, Hayden. Children younger than 12 are not allowed to visit the floors during flu season so we took a stroll down to Children’s Harbor and played for a while.
While we loved getting to visit family, being out in the activity hub was a real eye-opener as far as Annadelle’s mobility. She wasn’t able to play some of the regular games like her cousins and brother could. I think even she realized just how much she has to rely on others to do “normal” activities. At one point she had to use the restroom so Heather and I took her to a handicap stall. Heather helped me to get her pants down as I held her up and put her on the toilet. There is absolutely no way I could have done it all by myself, prompting myself to think about how on earth are we going to do this when we leave the hospital? What if we want to visit the mall or the beach or any public place? It made me realize just how much the parents of special needs children go through on a daily basis.
Right now Annadelle and I are sitting at the end of the long hallway on our floor overlooking UAB Medical Center. I’m updating the blog and she’s playing PBS Kids on my phone. I put her in a chair next to me out of the wheelchair and I’ve sat here for a bit and watched how she sits. You can tell she is tiring out easily.
Friends, we have quite a long road to go. Mentally I thought I was prepared but I’m questioning my own emotional abilities at this point. Please continue to pray for us in the upcoming months.
My sister-in-law, Heather, was gracious enough to create a t-shirt fundraiser to help with Annadelle’s medical expenses. Pre-orders are being taken until this Friday, November 23rd and shirts will be sent out soon after.
Chris and I are very impressed with Children’s of Alabama so far. It appears that all of the staff members communicate well, are educated about her care, and take the time to listen to questions and answer them properly.
Not only that, but every staff member we have come in contact with- whether it be in the hallway, the cafeteria, on the elevators, you name it- are extremely polite! They smile at you, hold doors open for you, and seem to genuinely care that if you are here it is because you are going through something difficult with your child. It’s hard to express how much of a difference kindness and compassion makes in your child’s care. I wish I could find the words to say exactly how much this means to us. Continue reading →
We received word early this morning that we had a bed at Children’s Hospital of Birmingham. Apparently BCBS worked out transport with an ambulance service that was out-of-network for us (LifeGuard). Our social worker told us to make sure to document everything about our problems arranging transport in the event we received a bill from LifeGuard, so I made sure to jot it down in my notes.
Dr. Roca also came in before we left and said a follow-up appointment had been set up for us with Dr. Maertens for February 19th of 2019 but she wasn’t sure of the time. I will have to call his office and confirm a time for that appointment. Dr. Maertens had told us he would not be seeing Annadelle on an outpatient basis and that I could find a neurologist that I wanted to use. I had specifically asked him about follow-up appointments so there is obviously some miscommunication between the doctors. I’m not ready to tackle all that just yet, though. I’ll deal with it when we get settled in rehab.
I’m writing this post now from the front seat of the ambulance. It feels so weird to be out and about on the interstate. Annadelle is playing on her iPad and eating BBQ Fritos. She has been pretty quiet through the trip and took a short nap earlier. She’s so excited to be going to Birmingham since it is closer to our old home, close enough where her friends and other family members can visit.
Chris and I will have to apply for a room at the Ronald McDonald house in Birmingham, but we have been told to expect a wait. Apparently there is always a waiting list at B’ham’s RMHC. However, I’ve been told the hospital facilities are probably a lot better than what we had at USACW as far as family and eating areas.
We are praying we see some rapid recovery now that we will be inpatient. She tires out during the 20-30 minutes of rehab she gets now so I’m curious to see how well she does with a minimum of 3 hours. I think if they are able to make it fun for her, especially in a group setting, she will do just fine.
We have had an eventful day with our transfer and getting settled in at Children’s Hospital of Alabama in Birmingham. The facilities here are much nicer than USACW and the amenities available are outstanding.
Our room has a great view! We are able to look over Railroad Park and have a good view of the train which Annadelle loves. We did not have a good view in any of the rooms we were in at USACW so it is a welcomed change.
We were able to meet the majority of our care team before dinner. Several doctors and therapists came in to introduce themselves and get a feel for what Annadelle can do as far as her movements. We were told to expect a minimum of 3 hours a day for therapy starting tomorrow. The only “off” day we will have will be Thursday for Thanksgiving. We are bummed that we will be in the hospital during the holiday, but we are so thankful that our sweet girl is making the progress she has! What better reason do we have to celebrate the holiday than that!?
We were also told that Dr. Ness will be coming by sometime to meet Annadelle and look over her case. Dr. Ness should already be familiar with her case since Dr. Sanchez talked to her about it and asked her to look over Annadelle’s scans. We are excited to meet her as we have heard great things about her. Apparently people from all over the country come to Children’s to see her regarding TM and AFM.
Overall we are very excited for our stay here and are hopefully for significant progress. Please continue to pray for complete recovery for this princess of ours.
I can’t believe I have had an opportunity to sleep and I haven’t taken advantage of it. Finding time to get good sleep in the hospital is basically nonexistent. Even when I’m able to sleep well, I wake up regularly after dreaming an alarm is going off or of Annadelle calling my name. Now I find myself creating an entire blog and watching Forensic Files rather than getting some much-needed sleep. Can you imagine when we finally make it home and have an opportunity to actually sleep in? In our own bed? It’s crazy to think about it right now. I feel like I don’t remember “normal” life before TM.