Monthly Archives: March 2019

March 14, 2019 Annadelle Turns 6

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

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

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

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

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

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

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

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

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

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

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

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

March 13, 2019 Birthday Eve

Tomorrow is Annadelle’s 6th birthday.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

March 11, 2019 Miscellany

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.

This photo was taken only a few weeks before Annadelle contracted AFM. We were videochatting with Christina Blan, Daniel Blan’s wife.

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.

Annadelle’s Ma Selke sent her this bow holder and a few Jojo bows for her birthday all the way from Arizona.

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. ❤

March 10, 2019

Life isn’t fair.

I’ve heard that too many times to count. I know that, indeed, life is not fair. I will never understand why some people face more struggles than others, but it doesn’t mean I can’t be angry about it.

To be blunt, I’m at the point in my stages of grief that I’m angry about what has happened to my family.

A few days ago, we went to the Orange Beach Arts Festival at the Coastal Art Center that sits right on the bay. There were many vendors, craft stations, and performances to enjoy, but I didn’t enjoy a second of it. Instead, I thought about this beach. Before AFM, Annadelle would have begged to take her shoes off and wade in this water. The sad thing is that I probably wouldn’t have let her.

But now? I wouldn’t hesitate to say yes if she could walk. I would give anything- literally anything- for her to be able to walk and enjoy life as she once did.

As we walked to the end of the pier, I was overwhelmed with sadness. It was a beautiful day with gorgeous weather, but all I could think about was that beach and how much I wished she could walk along and play in it.

It breaks my heart to know that the only way she can truly experience so many things is for one of us to hold her or carry her to it. She no longer has independence. She can’t brush her teeth by herself or brush her hair. She can’t get herself dressed or use the restroom on her own. Getting her dressed or giving a bath is a huge effort in itself. I try to focus on the things she can do, but it is quickly overshadowed.

We are exhausted. Mentally and physically, Chris and I both are worn down. We have spent so much time living in hospitals that it’s almost like we don’t know how to function outside of one anymore. Living our lives is now more a chore than a joy. We have lost ourselves. We don’t have many friends here and are both very lonely.

Of course I recognize this. I know there is a problem, but it does not feel like there is a solution. The solution would be for Annadelle to walk again, and I feel like we have been trying everything we know to get her to walk again, but God has not answered that prayer.

Every. Single. Night. I beg Him for her to walk. I don’t feel like he hears me. I see so many stories on the parent group from parents whose kids were affected like Annadelle was. Many of these kids are walking, playing, enjoying their daily lives. While I am truly overjoyed for them, a big part of me is so jealous. Why isn’t Annadelle able to do those things? Why doesn’t God fix it? Does he see all of these tears and hear these cries for help, for healing? It doesn’t feel like it.

I am so worried this is all of the recovery that she will get. I can’t help but battle this feeling that I have failed her already. I am not strong enough, mentally and physically, to do this for the rest of her life. I know that there are kids who recover with time, but I don’t feel like I am strong enough to do this for another year, two years, three years or more. Surely God knows this.

I am truly carrying more than I can handle.

Even still, we are continuing to try to get in enough therapy at home every day, praying that this therapy helps to strengthen her arms and legs. She is not tolerating the stander for very long at all and cries after about 30-45 minutes. We try to keep her motivated or distracted, but it isn’t working well.

We were finally able to order her SPIO vest, but I have no idea when it will be in. Hopefully we will get it soon because her posture is struggling and she has already developed scoliosis. The rep from NuMotion is meeting us tomorrow to measure her for her new wheelchair. I am praying that it comes in quickly and that insurance approves it.

Most of all I am praying for healing for Annadelle. I know that God has worked miracles in our lives while we were in the hospital. I saw it with my own eyes on several occasions. I am praying for another miracle, and that is for Annadelle to walk again.

Please pray for us. We need it.

March 7, 2019 Answered Prayers

Have I ever told you I’m not a morning person? Well, I’m not. I’ve never been one to get up at the crack of dawn and pour myself a cup of joe with a smile on my face. Quite the contrary, actually. I hobble out of bed and to the coffee maker, my hair looking like I just stuck my finger in a light socket and my face looking like Maxine from the column in the Sunday morning papers.

Even though Annadelle’s therapy doesn’t start until 9:30am, we still have an early start. Getting her dressed is a task in itself so we have been practicing letting her put on her own shirt, socks, and shoes. She does pretty well as long as we place the peanut ball in front of her to rest her arms on. Her legs are a different story- getting pants on this child is about like trying to put a cat in water. After she’s dressed, we do her morning supplement routine, brush her hair, brush her teeth, transfer her to the chair, gather all her stuff for therapy, feed her, and then get dressed ourselves. It’s rough, y’all.

Getting used to our new routine has me a bit anxious. I find myself clenching my teeth on the ride over to Fairhope; I have to remind myself to relax as I imagine all the possibilities of how this day could go.

I calm down a bit once we get to therapy and meet Pam, one of our new therapists. Apparently we will be rotating between 4 therapists which is no problem for Annadelle. She adapts well no matter who the therapist is, although she performs better with one that doesn’t cut her any slack. If you give her an inch in therapy, she takes a mile. It means we have to stay on her to push through. She normally does so with minimal complaints.

Pam and another therapist whose name I didn’t get decided to put Annadelle in a Lite Gait trainer and let her walk a bit. This is very similar to what we did at KKI, but they don’t put her on a treadmill here. They just let her walk around the room. Chris and I have decided to build a similar contraption (much cheaper, obviously) and place it over a treadmill for her to practice at home. We believe this repetitive walking is what helped her the most at KKI and we hope it does at home, as well.

As she was walking, we noticed she was taking large steps with her right leg and pushing down on her left leg. If you recall a post of mine from just a few days ago, she wasn’t doing that at all! Chris and I looked at each other, then back at her, and at each other again. Over and over we did this until we realized we weren’t imagining it. She was taking steps with her right leg. They aren’t as large of steps as she can do with her left, but it is an obvious improvement from even a few days ago. The pushing down on her left leg was an improvement, as well. It was a small one, but an improvement nonetheless. It really is answered prayers.

Because we know the power of prayer works, we are asking our friends far and wide to continue to pray fervently for improvement in her legs. Jeremiah 29:12 says, “Then you will call upon me and come and pray to me, and I will hear you.” I am calling to Him and ask that you do, too, so that our sweet girl may walk again. The God I know can do anything without limitations and that is exactly what I am trusting in Him to do- to completely heal our baby girl and bring her the quality of life she once enjoyed.

Today we received the Healertech FlexrGo! biofeedback device we ordered a few days ago. I opened the boxes and charged each sensor which took quite a while. I wasn’t able to experiment it much due to waiting for them to charge.

Once we got home from my mom’s tonight, I saw the sensors had charged so I put them on Annadelle to test it out. Here are two screenshots from the measurements taken on her biceps.

Although I wasn’t able to explore the device more tonight, I am pretty impressed with all the data available. I am going to play with it some more over the next few days to do a full review of what the device can do and how it should help us in our decision to complete a nerve transfer.

Other than therapy this morning and playing with the FlexrGo! tonight, we haven’t done much today. I’m hoping we get more into the groove of things soon so that we can be a bit more productive during the day. We’re still unpacking and downsizing our things which is taking much longer than we anticipated, but hopefully the end result will be worth it.

Thank you so much for the continued support and love. We do ask that you send up a prayer for Annadelle, specifically that her leg strength continue to improve so that she can walk again!