Category Archives: Transverse Myelitis

March 6, 2019 0 for 2

We had a hectic morning as we rushed out the door headed for Thomas Hospital, the rehab facility where Annadelle is now doing her physical therapy. Today was her first day there so of course we had another evaluation. Our time seemed to fly by so we only had a little bit to meet one of our PTs, Lisa.

Long story short, we were able to set up a daily PT schedule with them to include Friday pool days. I know Annadelle will be so excited about that. Unfortunately the only opening they had for OT was at 7:15 am daily, so we won’t be stating OT there yet. We have been put on a waiting list for a later time. I need to call USA tomorrow to st up her OT in the meantime.

I also need to remember to call the orthotist to see if he received any more info about getting her a SPIO vest. We were originally told we would be fitted for it through our PT but that didn’t seem to make much sense. Why even go through an orthotist if your PT would order it? Chad at Eastern Shore Orthotics was suppose to be checking on it but I haven’t heard back from him, so I’ll make a follow up call tomorrow.

That seems to be the norm now. I have to make a lot of follow up calls regarding equipment or appointments because it is so hard to get someone to call me back. I feel like I spend a lot of time playing phone tag. Meanwhile, she doesn’t have the equipment she needs. I know other parents hav been having the same issue.

Later on in the day, we drove to Mobile to see Dr. Sindel, a pulmonologist that we were referred to after our last hospital visit at USA Children’s and Women’s. Initially we were not impressed with him, but after a few minutes of talking to us he opened up. We explained AFM, as we always do to new doctors. It seems at times that we know more than they do about it.

Dr. Sindel talked to us for a bit about the comparison of polio to AFM. As it turns out, during his residency, his attending was the last doctor in the US to diagnose a case of polio. He said because of that he had always been intrigued with it, and he also has a family member who had polio. He said his relative still has residual problems but has lead a normal life. She is able to walk after having a tendon transfer.

Annadelle went through a breathing test and had an X-ray done. Dr. Sindel told us that if he wasn’t aware that Annadelle had AFM, her test results and clinical presentation would be that of a normal child. Basically, he did not note any deficits in her breathing.

He also told us that, looking at Annadelle’s X-ray that was done less than 2 weeks ago, she did not have pneumonia. Yes, you read that right. When Annadelle was back in the hospital less than 2 weeks ago, she did not have pneumonia- she had a collapsed lung.

Y’all. I was furious. Although I am no expert at reading xrays, I always ask to see them when Annadelle has one. When she was admitted at USACWH back in October, she had an X-ray daily, including when she developed pneumonia. The PICU doctors went over these xrays with us extensively and I was learning a little bit about what to look for, such as cloudiness or an unclear view of her diaphragm.

When she was admitted this past month, I looked at the X-ray they took upon admission and told Chris I thought it looked pretty normal. I told him I didn’t notice any cloudiness but I did see a line in her right middle lobe. It was very noticeable. When the ER doctor came in to inform us she had bacterial pneumonia, I was very surprised. I questioned her about the X-ray and asked her to pull it up and show us again. Over and over we were assured it was bacterial pneumonia, so she was started on IV antibiotics.

Every single day we were in the hospital, I asked for an additional X-ray. I was denied every time because “she has had too many xrays.” And yeah, I get it. We don’t want to expose her to unnecessary radiation. I know that. But once Dr. Estrada told me he didn’t believe her to have bacterial pneumonia and that his opinion differed from the attending, I questioned it even more.

Basically I say all this because I am mad at myself for not advocating harder for her. I knew something was not right with the X-ray and I should have insisted on another one. When I learned today that she had been put through an unnecessary IV (twice!) and we spent a week in the hospital for nothing, I felt so guilty for putting her through that again. Dr. Sindel told us that had she had another X-ray, it would likely have shown rapid improvement, as a collapsed lung normally heals itself quickly within a day or so.

If you take anything from my post, I want you to remember to always trust your instinct. You know your child better than anyone else, no matter how many medical degrees they may have. Before Annadelle was hospitalized for the first time in October, I listened to people I trusted who told me I was just being paranoid, a hypochondriac, that I was worrying for nothing. Over and over I had the same conversation with numerous friends and family members, some of which even have medical degrees. I should have listened to my instinct because if I would have, she may not have been affected to the extent that she was.

Anyway, I’m salty about our recent hospital trip, but not as bad as I probably should be. I’m thankful she is better and I would rather have been safe than sorry. I just hate that we subjected her to more and more pain when it wasn’t necessary.

For now I’m just praying. And praying. And praying some more. Praying for patience, comfort, guidance, but most of all healing. I am working hard to focus on God’s promise that what we ask for in prayer we will receive. I remind Him of that every time I pray.

Would you mind praying, too? Annadelle’s Army has been hard at work. I just ask that you don’t forget about our sweet girl. Her journey to health is far from over, and we need the support now more than ever.

Thanks for everything. I truly mean it.

March 3, 2019 BEMER Technology

I was productive today, a welcomed change from my recent habits. I didn’t spend the entire day in my pajamas sitting in the recliner drinking hot tea, but instead spent most of the day unpacking.

Of course this unpacking involves a lot of moving boxes from the “unpack” pile to the “donate” pile. I have a carload of stuff ready to go to the thrift store already and at least 8 large boxes still waiting to be unpacked. Our new home is much smaller than our old so we are slowly adjusting. In the meantime, my house looks like a disaster.

However, that didn’t keep me from agreeing to allow a rep from Hill-Rom to come and show us how to use the airway clearance vest Dr. Lovlie had ordered for us. I simply followed our introduction with, “Don’t mind our home. We live here!”

The rep showed us the vent system and provided Annadelle with a vest large enough to fit her. Dr. Lovlie had ordered the wrap, but the rep said the vests work much better so she brought both. It’s a child medium so she still has another inch to grow before she needs a vest the next size up. The rep said she would go ahead and order the next size and have it sent to us and to call her if we had any questions.

We are to use the vest twice a day for at least 20 minutes a session, even if Annadelle is not sick. The vest vibrates rapidly and allows the secretions in her lungs to be knocked loose and thinned out, hopefully preventing her from another bout with pneumonia and keeping her out of the hospital. I didn’t realize she would have to use it twice a day, but we will just have to add that in with our new schedule.

Our new schedule includes a lot of supplements, a few hours of therapy, and now the vest. We try to make the activities fun for her but she is growing bored with some of the activities we do. We tried to switch it up last night and have “movie night” which is something she loved while we were in Baltimore. She said, “Mommy, can we have movie night with popcorn?” We put her in her new recliner we got her from Wayfair before we went to Baltimore and covered her legs with a blanket. I wish I would have gotten a photo of her laid back in that recliner snacking loudly on popcorn. She was in heaven.

After the rep from Hill-Rom left, we headed back to A Better Way in Foley to get on the BEMER mat. We had been doing some research into the BEMER since we talked to Dr. Kelley the last time we went to A Better Way and found a plethora of positive information on improved circulation and general bloodflow.

Chris laid on the mat first for a total of 16 minutes, which is actually two sessions. You simply lay on the mat until the timer goes off. You don’t feel anything, but I did notice I felt warm after my session. Annadelle was excited to be on it at first but quickly became bored when she realized she would just be laying on a bed. She started to move around a lot so we had to keep telling her to try to be still, something easier said than done for a 5 year old.

Annadelle will be getting on the BEMER mat each day as long as Dr. Kelley permits. She is interested to see what kind of improvements in mobility Annadelle makes. The idea is that the mat will help to increase bloodflow, improve oxygenation of her blood and allow the body to heal itself at a much more rapid pace than it would without the BEMER.

Dr. Kelley wants me to make sure and keep up with what she can and can’t do right now, then what she can and can’t do after using the BEMER. Today (before BEMER) we noticed Annadelle can easily lift her left arm up over her head while she is in the tub. This is a drastic improvement from a few weeks ago when she was only able to use her bicep. Now she is actually pushing up in the water (but unable to in full gravity). She isn’t able to push her left leg down but she can lift it up very well.

She still has no movement in her left foot besides the two toes that we already know she can use. She can’t lift her foot up or “gas pedal” down. She can push down on her right leg very well but can’t lift it up well at all. If she could push down on her left leg, I think she could “walk” much easier so I have been praying for that OR for her right quad to “wake up”. One or the other would make the walking much better.

Her core seems to be getting stronger. She is still not able to sit up on her own from a flat position and she isn’t strong enough to transfer herself, but we are hoping for continued improvement.

Today we ordered the Healer Tech FlexrGo!, a wearable EMG device that was recommended in the AFM parent group. According to Healer Tech’s website, the FlexrGo! is “a wearable, surface EMG which provides clinical grade movement readings for biofeedback, neuromuscular re-education, and power-strength output.” What this means is that we should be able to place a “sticky” on one of Annadelle’s muscles and the device would show us a reading of how much she is using that muscle on a compatible device, like an iPad.

We wanted to go ahead and order the FlexrGo! so that when it comes time to speak with Dr. Moore about a nerve transfer again, we can have a better idea of what muscles are making improvements and which muscles may need a bit of help from a nerve transfer. I am very excited to be able to see what this device can do for us.

I also got a call from Kim at NuMotion about Annadelle’s wheelchair. We are trying to get her a lightweight titanium wheelchair with Power Assist, a device that connects to the back of her wheelchair and helps her to go long distances without wearing out her arms. The Power Assist works by giving the chair a “boost” and the Power Assist then turns on and propels the chair for her. It will be vital for her to have this device when she returns to school. We will have to meet for a “seating clinic” when we go to Thomas Hospital Rehab on Wednesday along with her new therapist. We were told that once insurance approves the chair (IF they do) then we should expect the chair in about 2 weeks, a much shorter time frame than what I anticipated. She really needs her new chair in order to give her some more independence around the house and out in public. I also need to order her some wheelchair gloves.

I forgot to post that Chris and I decided to obtain the services of a special education advocate. The advocate works with us to make sure Annadelle is accommodated for at the school. They work with us and the school to ensure a smooth transition and to make sure Annadelle is awarded what she is entitled to by law, such as a desk to fit her, a transportation vehicle for school events, etc. It is a bit costly, but well worth the investment to us considering this is our “new norm” and we want to make sure Annadelle receives what she deserves as far as school goes.

Again, I am asking what I have now dubbed Annadelle’s Army to continue to pray fervently that she be able to walk. I’d like to grow her army by using social media hashtags to include #annadelleyeah (her hashtag created by our friends Matt and Nicole) and also #annadellesarmy. If you don’t mind, could you share our posts to help build her army? The more people that see our posts, the more people that can be praying for our sweet girl. If there’s anything we know for sure it’s that prayer works.

Thank you for your continued support. We are mighty blessed.


If you would like to help with Annadelle’s rising medical equipment costs, please consider donating to our GoFundMe account.

March 2, 2019 Ballyhoo

Annadelle and her dad, Chris

After a long, seemingly-sluggish week at home, we decided to venture out a bit today to explore the beautiful cities of Orange Beach and Gulf Shores.

When we moved to Orange Beach, Chris did not come with us initially. Annadelle and I went ahead and moved into our new house and we enrolled her in kindergarten. Chris stayed behind in Anniston in order to make some repairs to our old home to get it ready to put on the market. He took a break from working on the house and came down to Orange Beach about a week prior to Annadelle getting sick, so we were not able to experience much of our new home together as a family.

Now that we’re home, we try to keep up with events happening at the beach (which is a pretty regular occasion). We noticed the City of Gulf Shores had been advertising the Ballyhoo Festival next to Tacky Jack’s. Y’all know I can’t resist an arts or crafts festival, so we drove over and met mom and Mike at the festival.

It wasn’t much compared to other festivals I have been involved with, but it was fun. We were able to see a Native American performance and see some beautiful pieces from local artists. Annadelle seemed excited to be out of the house (especially with her Nana who spoils her, even more so than I do).

After the festival, we drove over to a wellness center in Foley. A friend of ours had recommended another wellness store to Chris that was located in Orange Beach, but it was closed today so we went ahead to Foley (and are we glad we did!).

The wellness center is A Better Way Wellness and Chiropractic. They offer many vitamins and supplements, nutritional foods, vegan and cruelty-free products like shampoos and soaps, and essential oils. They also offer acupuncture, massage therapy, and something called BEMER technology. While we were there, we were able to speak to a holistic doctor about Annadelle’s illness and she was able to provide a plethora of information that could be beneficial to her healing.

This doctor, Karen, highly recommended placing Annadelle on a BEMER mat. The BEMER device was developed in Germany and the company, based in Liechtenstein, holds 5 international patents. BEMER is a Pulsed Electro-Magnetic Field (PEMF) device that is believed to help enhance blood flow, oxygen supply, cardiac function, memory, concentration, and the recovery progress from debilitating diseases. It is widely known for easing chronic pain.

We did not put Annadelle on a BEMER mat today because we wanted to do some more research before we did, but it looks like we will be going back early this week to try it out. Chris and I are going to try it before we put her on it.

Here’s a video from an episode of Dr. Oz that helps explain exactly what BEMER can do.

We also spoke to Karen about the benefits of CBD oil, as Chris and I have recently registered as affiliates with HempWorx. We had been doing a lot of research on the benefits of CBD while we were in rehab and learned that CBD (in general) may benefit the immune system and work broadly throughout the body as an anti-inflammatory, protecting cells from damages associated with neurodegenerative or demyelinating diseases. It works by activating something known as the CB1 receptor. Benefits of activating this receptor include mood regulation, decreased pain, increased cardiovascular health, decreased anxiety, and increased myelin formation (http://www.ncbi.nlm.nih.gov/pubmed/21480865), among many other benefits.

I know CBD can be controversial, but Chris and I feel very strongly about the benefits of hemp and are willing to take alternative routes in order to heal our child.

If you’d like to order through us, just visit www.hempworx.com/cnfaulkner or send us a message for more information. We can also order sample packs.

Tonight we were able to attend a Mardi Gras parade in Orange Beach. Annadelle had an absolute blast as her daddy held her at the fence the entire time in order to catch some beads. There were several families around us that kept giving Annadelle beads they caught. We kept trying to tell them they did not have to do that, but they insisted.

We have noticed that almost everywhere we go, people will give Annadelle special attention. Many people will give her little gifts or even just hand her money. We are constantly asked, “Why is she in a wheelchair?” to which we simply respond, “She has a spinal cord injury.” No one understands what we mean when we say, “She has acute flaccid myelitis.”

However, we did meet a woman today who is a new EMT that actually was familiar with it. When she asked and we said she had AFM, she said, “Oh, you mean she has polio?” Why yes, that’s exactly what I mean. We talked for a long time about AFM and how it has affected our family- how Annadelle went from a totally healthy, happy child to completely paralyzed within just a few days. It has turned our lives upside down.

As we sat at the parade, we noticed a group of boys were playing ball behind us. Annadelle said, “He’s in my class!” I looked to see that the boy really was in her class, but he didn’t recognize her as she said hello. I almost cried as we sat there realizing that we have been in the hospital so long that she had literally been forgotten by her classmate. She wanted to go over and play with the boys, but we were hesitant. She can’t navigate her current wheelchair well at all and it she would not have been able to move around like they were. I think I was more worried about it than she was, but I can honestly say we just weren’t ready to deal with the situation we found ourselves in.

Although the recent days have been a little better since my talk with Frances, I am still struggling with feelings of doubt and uncertainty. It’s almost like I have forgotten God’s promise, but I’m human and I have flaws. I keep telling myself over and over that she will walk again, but I would be lying if I said I didn’t question myself.

I’d like to ask a special favor of my readers, which is around 2k a month now. I truly believe in the power of prayer – the power of quantum healing – and I’d like to form a prayer army. I’d like to ask that our family, friends, or readers from far away take a moment to pray for Annadelle, specifically that she walk. Being able to walk would improve her quality of life ten-fold. It would allow her to be easily included in school and activities, giving her a chance to play with her friends and not receive constant stares or questions about her chair. It would give her independence and allow her to play on the playground or build sandcastles at the beach. It would be an answer to a prayer that I have said too many times to count.

But at this point, I’m not sure my single prayer is being heard much. I’m asking that, if you’re reading this, you join me in saying a special prayer for Annadelle to walk.

Lord, I come to you today with a grateful heart. I want to thank you for the many blessings you have bestowed upon me and my family. Lord, if it is your will, I ask that Annadelle be fully healed. I ask that you touch her legs and her feet and restore the movement there that is missing, allowing her to walk and enjoy life as she once did. I pray this in Jesus’ name. Amen.

Thank you for the continued support. If you don’t mind, would you share this post so that our prayer army would grow?

February 28, 2019 Rare Disease Day

After my talk with my sweet friend, Frances, yesterday I woke up feeling a little better than the day before. I suppose it is normal during this readjustment period to have good days and bad days, but I sure hope the bad days are few and far between.

When I woke up, I made breakfast for Chris and Annadelle, although Annadelle didn’t eat much. We are trying to get her into a routine of eating a whole food diet – eliminating processed foods, meat, and dairy – in the hopes of giving her body the right nutrients and minerals to help her body heal. Because there is no medicine that can help her at this point, we have been looking into optimizing her health so that her body can essentially create its own medicine.

Doing this has proven much more difficult than we thought. She is so used to eating a bunch of junk that getting her acclimated to a healthier way of eating results in her not eating much. We are hoping that the more we do this, the hungrier she will get, and she will eventually eat.

Before anyone reading jumps all over me, the food isn’t cardboard or a bunch of lettuce. Today’s breakfast was tofu scramble with sauteed potatoes and avocado. Since Annadelle wouldn’t eat it, she ended up eating a piece of toast and an orange. Although, I shouldn’t have to justify feeding my child a healthy diet, so there’s that…

Annadelle “helping” clean up the yard while Daddy works on fixing the fence

Earlier this week I contacted a hospital closer to us than Mobile about outpatient therapy. Annadelle’s pediatrician as well as some of her therapists in Mobile recommended this new hospital because they have specialized equipment that would aide her better, including hydrotherapy pools. When I called on Monday, the person who does the intakes was sick so I was forced to leave a message. I waited for her to call back, but when she didn’t I called again today.

To be honest, the person who I spoke to was not very friendly. She talked to me like I was inconveniencing her and was very short in her responses when I asked questions. She asked me if I had the physician’s order, which obviously I don’t, and told me she needed it before she could set us up an appointment. I hung up with her and contacted our pediatrician’s office and was informed they had indeed sent the order last week, but they would fax it again. I am going to call back to the hospital tomorrow to see if it’s there. I’m pretty frustrated that it is such a struggle to get her set up, but several people have told me this would be the best place for her to go with her diagnosis. We love our therapists in Mobile so it is a difficult decision to make. We will see how it goes.

After lunch, I put Annadelle in her stander for a bit and attempted to distract her by taking her over to Nana’s. We only live 2 doors apart so it wasn’t a far walk, but moving her over uneven surfaces in the stander tired me out quickly. My mom helped a lot and came up with an idea to attach a dog leash to the front bars so that we could pull her a little bit. It worked really well, especially when we went over to my cousin’s house to see his little girl, Abby. He lives a few units down from us, as well, so we walked over with the stander. We saw Abby for a few minutes until Annadelle started complaining about her foot “tingling” which is normally the first sign that she is getting uncomfortable in the stander. She ended up lasting 31 minutes before crying ensued and we took her out of it.

Our goal is to start doing more and more in the stander each day to build up her tolerance. It is our hope that the more she is able to bear weight on her legs, maybe the sooner she will be able to walk. I pray day in and day out that she will start walking to get her independence back, because I know she struggles with having to wait on us to do everything for her. It is so hard to watch a child want to play with other kids but be unable to because of bulky equipment being in the way. A relative of ours recently ordered us a walker with the bottom strap from our Amazon wish list. We are praying that once we get it it will improve her walking.

We pretty much have the same plan for tomorrow, except that I am creating her a chart to help motivate her to do therapy. It was an idea I got from Frances, like a reward system for positive reinforcement. I will share the chart once I create it on canva.com.

Please continue to pray fervently for our sweet girl, specifically that we will see improvement in her legs (quads and glutes) so that she may walk.

February 27, 2019 Grief

There’s a small oak tree visible from my bedroom window. The leaves are wilted and brown from the cool winter weather; acorns scatter the ground beneath the tree.

When we first moved to Orange Beach, I would lay in bed each morning and stare up at the beauty of this tree, watching as its limbs waived in the warm gulf breeze. Chris had not yet moved yet so it was just Annadelle and I sleeping in the same bed, snuggling with a few eskimo kisses before getting up to prepare for school.

This morning as I woke up and stared at that tree, a tear faded down my cheek and onto my pillow. I looked over at Annadelle, still asleep in our bed and snoozing like it wasn’t already 8:30am. Chris had gotten up early to go to Lowe’s so once again it was just me and Annadelle. When she woke up, she asked me, “Can you turn me over?”

And that is the difference from a memory I never knew would be so significant.

We’ve been out of the hospital for a few days now. We were finally released last Saturday as Annadelle’s SATs went back up (and stayed up) to her normal level. We came home on antibiotics that she is still taking for another day.

Since we left the hospital, we haven’t done much at all. Chris has spent the last few days tearing down a part of our fence to repair it, as months of overgrowth took over and ruined an already fragile fence. Annadelle and I have spent most of each day watching TV, taking a very small amount of time to do therapy. She fights me when it comes time to do it and whines a lot.

To be frank with you, I’m engulfed in emotion, so much so that my desire to do much of anything has faded away like the tear from my pillow. I say “I’m overwhelmed” because I don’t know how else to say I am drowning in worry, uncertainty, and hopelessness. It feels like our lives have stopped while everyone else has moved on, like we’re on a treadmill while our friends are walking on a path. I don’t know if Annadelle will ever walk again. The not knowing is killing me inside, ripping away what tiny amount of joy I have.

And of course I feel guilty about that. I should have joy, right? Of course I should. I should have joy in Christ, joy in knowing Annadelle is here with me, joy in hope for the future. But to be honest, the joy is overshadowed by the burden and responsibility I now have, and I’m terrified I will let her down.

Tonight my friend Frances called me. Frances’ son, Matthew, also has AFM. We spent a lot of time together as roommates in Baltimore and I can honestly say I consider her family now. She has probably seen or heard me cry more than any of my other friends I have ever had and she’s pretty good at making me feel better.

I explained to her that now that we’re home, the reality of how life is now is setting in. I am exhausted from doing every little thing to keep Annadelle occupied or working on therapy or eating or bathing or literally anything. Frances knows exactly how I feel, as she is having to do the same with Matthew.

We talked at length about how we feel dealing with AFM. It was such a relief to know she feels as lonely as I do, despite us both being surrounded by friends and family. When we first went in the hospital, my phone was blowing up with people checking on us or sending us well wishes. I don’t guess I appreciated that as much as I should have at the time because of how unstable Annadelle was. I was preoccupied with every single aspect of her care that I didn’t take the time to really listen to many people calling or messaging. Now that it has stopped, I wish I would have waited to open the letters or texts. I know that sounds strange, but it feels like everyone else’s lives have gone back to normal as we are here still dealing with trauma that seems never-ending.

I know this post seems like a big ol’ pity party, and in essence it really is. I am trying to be painfully honest so that when I’m passed this feeling I can look back and laugh at the worries I have now. Talking to Frances made me realize I wasn’t the only person feeling like this. She helped me to realize how far Annadelle has come and how far she will go with continued work. Frances basically gave me a slap across the face and told me to get my ass back in gear, something I didn’t even know I needed.

Anyway, would you pray for us? I would ask that you pray specifically that we see improvements in Annadelle’s legs so that she may walk. I would give anything for her to walk again.

Thanks for everything, and I promise my next post to be more uplifting.