Tag Archives: Dr. Amy Moore

August 25, 2019

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 in prone position after CPT.

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.

Annadelle at school (first grade)

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.

This is Cami, part of our extended AFM family who was diagnosed in 2016.

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.

May 14, 2019

I know, I know. It’s been a HOT minute since I updated. But listen, I’ll be very frank about this- I haven’t been in a good place.

Once we came home and began to adjust to life as we now know it, I lost myself. I guess you could call it depression, but it felt like so much more than that. Being lost. Hopelessness. Neglect. Immense sadness.

Imagine writing in a notebook or a journal. Think about your day and write it as it was. “I went to work, then I came home and made dinner.” The next 52 sentences are written to chronicle what happened in your day. The next line becomes just that- only a line. It doesn’t stay straight, but it strays from where it should be and before you know it your pen is all over the paper, a tornado of ink flooding what was once a well thought out description of what you did that day. Now you can’t read what you wrote. All you see is black.

That’s what my life has felt like since October 1, 2018. A swirl of black blurring the images of what life should have been.

Through a lot of prayer, I’ve managed to bring myself out of that hole, at least for the most part. There are still days where I struggle to maintain a smile or be joyful. I think that is to be expected.

Since my last post, there hasn’t been much that has happened. We are just continuing to live our lives and work on Annadelle’s therapy.

This past week we started an intense day treatment program at Thomas Hospital where Annadelle has been attending PT and OT three days a week, but now it is every single day from 8am-12pm. If I’m honest, it’s kicking my ass. I thought initially it was because I am not used to getting up so early, but I now think I can attribute most of my general feeling of being tired to a low carb induction which I began May 8th. This is known as the “low carb flu” that sometimes results as your body excretes excess sugars in order to use fat for energy rather than carbs. Since I’m almost through the first week, I’m know that sluggish feeling will go away soon.

Chris also bought me a car. It’s a Jeep Wrangler and I absolutely love it. However, as our luck would have it, the engine went out on it the day after we bought it. And of course we bought it from an individual so we thought we were screwed, but alas God stepped in and made it right. The guy who sold us the car ended up sending us money to fix the engine, so we weren’t out anything. Chris ordered an engine and has been putting it in for the past week and a half by himself. He used to work as a jet mechanic so he has a basic knowledge of engines and whatnot. Praise God for that, as the labor costs would have been twice the amount we paid for the engine.

Easter was hard for me. I have always enjoyed Annadelle running to grab Easter eggs with her cousin, but she wasn’t able to do that this year. We decided to take her to the beach and put her on a sled we have and pull her around to find the eggs on the beach. We invited a few friends to come but they all declined so our Easter was rather lackluster. It just made me realize how much she isn’t able to participate in now which made me feel so much worse.

That feeling has improved slightly since Annadelle was able to get her new, lightweight wheelchair. She moves herself around a lot more now, especially around the house. It obviously doesn’t help at the beach or at a playground, but we are steadily praying that we need some major improvements with therapy.

As of the end of last week, Annadelle “walked” on a treadmill at therapy. She was in a harness with virtually no weight being placed on her lower extremities, but she was moving her legs in a walking motion without the help of anyone. I posted a video of this on my personal Facebook page that I hope to upload to YouTube soon for our readers to see. I’ll update when I get all the videos uploaded. Her therapist, Lisa, and myself were completely shocked. She had never gotten on the treadmill and moved her legs as she did. It was the first day in a long time that I felt a true sense of hope that she will one day walk again.

With that being said, Chris and I decided against putting her through a nerve transfer surgery. The short reason is because we just didn’t feel comfortable about it. If we change our minds, we’ll call Dr. Moore’s office to see if we can reschedule, as her surgery was scheduled for May 22. When I told Dr. Moore’s office we wanted to cancel, they didn’t ask why. A simple, “Ok, thanks,” and the conversation was over. It made me feel like my kid was just a number and they would move on to the next without hesitation.

I’m sure there’s a lot more to update about since I’ve been MIA from the blog for so long, but I’m exhausted and ready for a good night’s sleep. I just wanted to hop on with a quick update and a thank you to those who check on us periodically. The days and weeks following trauma are hard, but the months after are much harder. Reality sets in and you are often forgotten, so I just want to say a special thank you to those who have continued to keep our baby girl in your prayers. Our journey is far from over.

February 6, 2019 Saying Goodbye to Kennedy Krieger

After four months of living out of hospitals, we are finally saying goodbye to inpatient life. We bid farewell to our therapists and the staff of KKI after a long day of therapy in a mostly-empty gym.

Our long-time roomies, Frances, Mike, and Matthew left a day before we did, but even one night without them felt so lonely and awkward. We have grown to know and love them as our own family, so the separation got us both. Chris drove them to the airport and when he got back, he told me Frances cried the whole way there. I don’t either of our families expected the rush of sadness we would feel by separating, especially since we were able to connect on such a deep level. It’s a special bond we share because of our kids’ diagnosis. We truly know how the other feels without ever having to say it, just like many of the AFM parents. We’re a club. Unfortunately, none of us wanted to join.

Saying our final goodbyes to the Parks
Matthew and Annadelle during their last night together in Room 302

I’m not sure if I had updated the blog after Laura and Francisco left, but if I didn’t, they left on the 2nd. We were so sad to see them leave, but Francisco was overjoyed. We loved seeing the smile on his face as he made his way to the elevator. We will forever cherish the relationships we established at KKI and look forward to seeing Francisco and family whenever we head out to New Mexico.

Friends forever

The day before the Parks hopped a flight to St. Louis, we all took a TLOA and went over to Elicott City to eat hot pot, a type of Chinese cuisine Frances had told us about. It was an amazing experience! If you’re never heard of hot pot, try it out. You’ll love it.

We also went through Elicott City’s main street downtown and walked around to a few of the shops. We explored the B. & O. Railroad museum which is apparently the oldest train station in the U.S.

Of course, we snapped a few pics for the blog.

Mike, Matthew and Frances

The last two days in the gym felt very lonely. We were one of the only families in the gym as Annadelle finished up her last sessions, but the therapists and techs especially tried to make up for the emptiness. One of the techs, Nadine, played a pretty long game of hide and seek with Annadelle while she was in the stander. Normally she complains after being in the stander for about 20 minutes, but when Nadine distracted her with the hide and seek, she was in the stander over an hour without complaining. Our PT recommended a stander for home use and has sent the prescription to our local medical supply dealer, Jeff with Coastal Medical. Once we get home, we will need to speak to him about the stander and a titanium wheelchair with power assist.

We are now at our hotel for one last night before heading into D.C. tomorrow. Dr. Moore’s office said they would let us know tomorrow whether or not they could fit us in for a consult before heading back to Alabama, so we’re going to spend the weekend in D.C. while we wait word from Dr. Moore’s office. If for some reason they cannot see us early next week, we will head home to Alabama.

Please continue to pray for our sweet girl in the upcoming months. We have a lot of work to do and are continuing to keep faith that Annadelle will be completely restored. I felt that we had taken a step back since her therapists did not feel like she has enough strength to continue with inpatient therapy, but Chris has reminded me that what we ask for in prayer, we will receive.

January 28, 2019 Old (and New) Friends

I think we are finally starting to get into the groove of things at KKI. It seems like each day is the same thing over and over, which can get really boring but we know it is helping. We’ve said time and again that we’d stay in Baltimore as long as we had to in order to get Annadelle the best care available, no matter the sacrifice.

We are definitely seeing improvement in Annadelle’s mobility, especially in her left hand and arm. Her OT, Miss Lisa, made a splint to use on Annadelle’s right arm to keep her from using it. Because it is so much stronger, she resorts to using her right hand instead of focusing on helping the left one. Almost immediately after putting on the split, Annadelle has been improving on the weaker arm. There still isn’t a ton of movement from her upper arm on either side so we have decided to consult a surgeon regarding a nerve transfer.

The surgeon we chose is Dr. Amy Moore out of St. Louis. We had heard nothing but good things about her and have seen several articles featuring her, especially on AFM cases. I contacted her office through email and sent a long list of attachments with Annadelle’s medical records and necessary information. We are now waiting to hear back from Dr. Moore about a possible in-person consultation. I have heard others say she did a telephone consult, but I’m not sure if that is an option for us.

Because Annadelle’s left foot isn’t doing much as this stage, we are pretty sure we will go ahead with a nerve transfer on that foot if possible. We are still on the fence about any nerve transfers on her upper extremities and have still been praying fervently about a decision. We don’t have a long window of opportunity seeing as to how we are now 4 months post-onset. In order to have the highest likelihood of success, surgery needs to be done no later than 9 months post-onset. Some transfers have been done up to a year post-onset, but outcomes are not as successful.

Speaking of successful outcomes, we were able to speak to Dr. Pardo from Johns Hopkins Hospital today. He is a pediatric neurologist and I believe he is the head of neurology at JHH. I have heard a lot of good things about him and his knowledge of AFM. I know he has been studying AFM for many years and has followed over 40 patients throughout that time, assessing initial clinical presentations and monitoring outcomes over time. I had been very interested to talk to him about Annadelle’s MRI since the only information we received about it was from the team at USACW in Mobile when she had been diagnosed with Transverse Myelitis instead of AFM.

Dr. Pardo and another doctor, Dr. Murphy, sat down with us and spoke about Annadelle’s initial symptoms and visits to care facilities. We had been to 3 facilities before arriving at USACW in Mobile. Since being there, we have been at 2 other facilities. Needless to say, we have received a lot of differing information regarding Annadelle’s diagnosis so hearing about AFM from someone who has been studying it for years was refreshing.

Dr. Pardo also showed us Annadelle’s MRIs and explained what exactly we were looking at. He said compared to many other patients with AFM, he believed she is a “moderate” case. He said he would consider it mild by looking at the lesions on the MRIs but says “moderate” due to the fact that she was affected from the neck down. Basically, he said her injuries could have been far worse.

I asked him if Annadelle had had any white matter involvement (i.e. injury to her spinal cord in the white matter, not the grey matter) because we were told she ONLY had white matter involvement by Dr. Merritt at USACW. As it turns out, she only has grey matter involvement, making her case a classic case of AFM. Had she had white matter involvement, she would have experienced loss of sensation which she has not. Grey matter involvement affects movement, making paralysis “noodle-like” and flaccid.

He also said something that shocked me, and that is that he believed based on her MRIs and her clinical presentation that she would make a full recovery. He did not say those exact words but he definitely alluded to it several times. He said, “I think she will be back to her normal self, but it will take some time.” I thought I was being delusional when I heard him say that so I asked him several times if he meant a significant or full recovery to which he said, “Yes.” It surprised me because I did not expect any doctor to make a statement as bold as that, but he said based on the patients he has seen over the years that it is very likely.

Obviously Chris and I have been on Cloud 9 since our conversation with Dr. Pardo. We have been believing for full restoration, but it gave me some relief to hear it from a neurologist. Yeah, he could be full of crap, but I’m just going to enjoy the high while it lasts (so, please, don’t pop my bubble).

Therapy at KKI is continuing as usual. Annadelle was able to swim in the pool with Miss Brooke today which she loves. She did well walking on the pool treadmill and seemed to be in very good spirits. We have been able to keep her motivated with the introduction of a “bribe box”. It’s a plastic bin full of small toys individually wrapped with wrapping paper. If she does well in therapy for the day, she gets to choose a bribe from the box. So far she has opened toys like the tiny polly pocket, Disney princess figurines, and a Kuboka box. Target had a lot of small toys on clearance so I was able to snag toys for as low as $0.99-$3.99. Hey, whatever works.

Over the weekend we were able to take advantage of another TLOA with the Park family and my long lost friend Whitney. I had not seen Whitney since the 6th grade when we lived in Huntsville. Whitney eventually relocated to a town right outside of Baltimore and had been following Annadelle’s story on Facebook and the blog. When she learned I was in Baltimore, she messaged me for a meetup. It was awesome to be able to spend the day with her and her family, as well as the Parks, and have some fun at the Maryland Science Center. There were a lot of interactive exhibits that Annadelle couldn’t access easily in a wheelchair, but she still had a lot of fun.

After the museum, we went with the Parks to a vietnamese restaurant called The Red Boat. Frances and Mike introduced me to my very first bowl of pho, which I had been pronouncing as “foe” when it is actually pronounced “fuh”. That’s not as bad as when I pronounced the word acai as “aye-kye” so there’s that. (It’s pronounced “ah-sah-ee” if you are wondering. #themoreyouknow)

While at the restaurant, we heard an incredible story from the store’s owner. I am going to paste what Mike Park wrote about the experience from Matthew’s blog since he explains it so well:

“After dropping off Fran’s mom at the airport we went to eat Pho. Even though everything came in a disposable bowl, it was very good, definitely have to go back one more time before we leave. We spoke to the owner a little bit about Matthew and Annadelle. It started with the usual where are y’all from and we explained our reason. He wished us well and we went about our business. As we were leaving, he told us a personal story of his own life.

He was one of 8 children growing up extremely poor in Vietnam. When he was an infant, he got an unknown viral infection and was completely paralyzed on his right side. He said the entire village was hit and many children were paralyzed or hit with neurological impairment. His parents were too poor to take him to the doctor or give him any medicine. Somehow, and in my belief by the grace of God, this man was able to recover. He had no neurological damage and the only reminder he had from that is his right foot is smaller than his left. Other than that, no pain or numbness. We all discussed it as we drove home. We were blown away. If that were not enough, there was a woman in the parent Lounge at KKI that told Neeli about someone she knew in her home country that also had paralysis and recovered. No such thing as coincidence.”

So many stories of recovery all in the span of just a few days. I honestly felt like God was speaking to me through these encounters, as crazy as it may sound. I’m okay with crazy. Crazy gives me hope, something I’ve been clinging to for the past 4 months.

Something everyone needs.