Monthly Archives: January 2019

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.

January 25, 2018 Sisterhood

I can remember my husband’s voice as if it was yesterday telling me, “There’s got to be a silver lining.”

I was furious. Livid. Enraged. Homicidal, even.

“Are you kidding me?” I replied as I glared at the multiple tubes sticking out of our daughter’s face, “What could possibly be wonderful about this situation?”

There was no silver lining. No smiles. No laughs. No joy whatsoever.

It wasn’t until today that I appreciated what Chris had said during our fourteenth day in the PICU. It may have taken me almost four months, but I have finally found the silver lining. Or should I say silver linings, because I now realize there are many.

To be honest with you, I’m probably a better person now than I was four months ago. I was pretty selfish, vain, greedy, unappreciative, and trite at times. I complained a lot about absolutely nothing. The cancer that is complaining took over my body the more I allowed it to, each day filled with more gloom and negativity than the day before.

It seems as though God had to strike me down for me to realize how good I had it. It’s funny because I prayed for things like patience, understanding, and happiness. I thought I received the exact opposite, but it turns out I got exactly what I prayed for. As the old saying goes, “Be careful what you wish for.”

I suppose I found the silver lining today after speaking to a woman named Christa whose son, Sebastian, was affected with AFM two years ago. Like Annadelle, Sebastian was paralyzed from the neck down. He has since undergone surgery for nerve graphs in both his upper and lower extremities. Christa spoke to us about his recovery and offered words of wisdom for us mammas who are just now getting acclimated to life with AFM.

After our conversation, I realized I was now a part of a sisterhood. I have been indoctrinated into a family that I never wanted to be in, but am now grateful to be a part of. It helps to have a shoulder to cry on that understands your pain exactly as you feel it. One day your child is running around playing. The next she’s close to death. Blink, you missed the good times. Now you’re learning to live life anew. You cry in the shower and sink to the bottom of the tub as the water flows over you. You beat the steering wheel in your car as you scream out in anger, tears aplenty. You hold your breath as yet another doctor cuts into the little hope you have when he says, “She probably won’t recover.”

The worst part of it all is that there are probably many more parents like me, much more than what is being reported.

While it is wonderful that AFM has received the publicity it has in recent weeks, there is still much to advocate for. Did you know the CDC is not requiring hospitals to report suspected cases of AFM or cases of patients exhibiting similar symptoms? This means the reported number of cases of AFM is widely inaccurate, with some doctors estimating AFM has affected at least 10 times the number as being reported by the CDC. Imagine the number of parents seeking information and being unable to find it. Many AFM patients are often misdiagnosed with spinal stroke, transverse myelitis (as we were) and ADEM, leaving a more accurate estimate of AFM cases unknown.

To date, the CDC has not done much to combat the diagnosis. Only recently has an effort been made to establish a task force to learn more about AFM, and that was only done after members of the AFM parent group traveled to Washington to meet with members of Congress.

A few of our AFM mom and dads have been working to establish the Acute Flaccid Myelitis Association (AFMA) to advocate for education and research for AFM. You can visit the newly-established website at http://www.afmanow.org.

Chris and I will be updating our blog here within the next few months to include helpful information for parents of children with AFM. It will include a “common questions” page that will address the diagnosis itself, causes, and possible treatments including alternative medicine and home therapies.

Please join me in advocating for research, education, and a cure for AFM. Talk to your friends, write your legislators, and share AFM info as you see it. A small gesture can make a big difference in the fight against AFM.

January 22, 2019 Rolling Along

I have been all up in my feelings the last few days.

I am trying my hardest to remain steadfast in my faith and believe that my baby girl will heal completely, but I’m human. I can’t help but ask questions when I am unsure of the answer. I keep reminding myself that what we ask for in prayer, God will give us.

I wish I could say Annadelle’s lack of movement was my only worry, but I’ve also been stressing about our hospital stay. We have had some problems with miscommunication between the nursing staff which caused me to become very irritated. Pile that on top of the stress of having to find lodging and I’m a big mess. Thursday we will have to leave the Children’s House and find a hotel to stay in so Chris is going to make reservations at the Holiday Inn Express assuming they have a room available. It is one of the few hotels nearby that offers a free shuttle to KKI.

Over the weekend, we joined our roommates for a trip out to the movies and dinner at Bonefish Grill. We took the kids to see Aquaman at a theater a short drive away that offered reclining seats and trays. It was so nice to sit back and relax for a bit and focus on something other than hospital life. Bonefish was nice, too, because we were able to just enjoy a nice dinner with our new AFM family. We are so glad we met Frances, Mike, Matthew, Laura, and Francisco. We are going to make sure and send them some snail mail when we get home to a Orange Beach.

I posted on Annadelle’s Facebook page that she had not done well in therapy over the weekend. She had a great day on Friday and actually took some steps on her own with her left leg after Miss Courtney gave her some AFO’s. I took a video of her walking and have watched it approximately 835873847576847878734755 times since then. But for some reason she seems to have lost motivation after Friday. I am wondering if it is because Chris and I both attend therapy with her. She seems to work better when I am not in the room so I am debating on whether or not to attend sessions with her anymore. This is a hard decision because if I don’t attend the sessions, I won’t be able to know what to do with her when we get home as far as home-based therapy goes. I am praying that we see a quick improvement in her mood so that she can progress with her walking and standing.

Today we also spoke with Dr. Bellzburg, a neurosurgeon from Johns Hopkins Hospital, regarding nerve transfer surgery for Annadelle. We had already contacted Dr. Amy Moore in St. Louis about the surgery, but one of the nurse practitioners at JHH told me about Dr. Bellzburg. She said he had experience with transfers in the lower extremities, but he did not seem very confident about it to me. He suggested we get 2-3 other opinions which made me feel like he was telling us to go elsewhere, that he wasn’t interested in the surgery. We aren’t even sure if nerve transfer is the route we want to take, but we at least wanted to talk about the pros and cons. I think we were both left feeling like we didn’t get much information.

Sometime this week Dr. Pardo is going to come and speak to us about Annadelle’s diagnosis. He is a pediatric neurologist who has seen many AFM cases and works out of Johns Hopkins. He received her imaging from her two MRIs today so I am very interested to see what he says about her lesions.

I don’t have very much else to update about. It seems like every day is the same here, just rolling along. I am really just feeling like I need a shoulder to cry on for some reason. Not really to vent about anything, but maybe just a hug.

Thank you to everyone for sharing our story and especially our GoFundMe account. Being in Baltimore is a lot more expensive than we anticipated. The link to our GFM is below.

https://www.gofundme.com/fund-for-princess-annadelle&rcid=r01-154821625071-55b84b710d414b0b&pc=ot_co_campmgmt_w

Also thank you for all of the prayers and support. Please continue to pray fervently for our sweet girl so that she may walk again. I will update more in a few days.

January 17, 2019 Movie Night

Annadelle is fast asleep after a long, productive day of therapy and the all-anticipated movie night with her roomies. Bless her heart. She was so tired that she didn’t even make it through the first sentence of bedtime prayers.

I didn’t have a chance to update last night because it was so late when I got back to the room. Wednesday was busy, too, even into the dinner hour, so by the time I made it to the room I crashed.

The first part of the day yesterday was more therapy as usual. Annadelle used a large robotic arm in OT that helped to evaluate what all she could do with her upper arms. I left feeling disappointed because I thought she was doing a lot more with her upper arms than what she is, but it is actually her shoulder that is doing most of the work. Her biceps and triceps are still extremely weak on both arms.

After therapy, she was treated to a trip to the aquarium with two of her friends from KKI. The recreational therapy department here is really awesome and it is obvious that they really care about the kids. Annadelle’s favorite part of the trip was seeing the dolphins and jellies.

After the aquarium trip, we took Annadelle to the playroom with her friends and went on a parent trip to Target. We only had a limited amount of time to get everything we needed and get back to the shuttle so it felt a lot like the supermarket sweep gameshow I watched as a kid. We were exhausted by the time we made it back to the shuttle but we had fun. It felt like normalcy again even if for a brief second. I got my boo bear some lights to hang in her room similar to what Francisco and Matthew have, and of course we got her a blind bag. She was so excited to see her surprise when we got back.

Today’s activities didn’t last as long, but it was still a busy day. We have been trying to fit in schooling sessions between therapies. Sometimes she is all for it but other times not so much. She is very behind in school since we have been in the hospital so long and I am trying my best to catch her up. I don’t want her to get back to school and feel like an outcast since she isn’t reading like the other kids. We are still working on learning all of her letters and sounds, recognizing her numbers and learning her sight words. I have been printing out letter sheets and working on writing them with her, circling pictures of items that start with certain letters, etc. The photo pictured above is her playing Go Fish with number cards in an attempt to learn all of her numbers. I haven’t done much with the ten frames but hope to be able to go back to the store to get a few more supplies to be able to work on that here in her room.

Therapy today, especially the afternoon therapies, went very well. Miss Courtney out Annadelle on the adaptable tricycle and let her work her legs. We were blown away by how well she did considering when they put her on it during our stay in Birmingham, she wasn’t able to use any of her legs to peddle. She still needed a tad bit of help from Courtney, but overall she moved the tricycle on her own.

OT was a bit more difficult when Miss Lisa had her use the arm bike. Her muscles seemed to tire out very quickly and she began to cry a few times, but we encouraged her to push through it. She is such a trooper when it comes to pain and manages it very well. At the end of the session, Annadelle got to ring the bell in the gym showing that she completed a new or difficult task. That is two days in a row that she has gotten to ring the bell so she was very excited about that.

We haven’t received our schedules for tomorrow yet. They normally bring them in pretty late. I may not update tomorrow depending on how busy our schedule is.

As usual, thank you for all of the support, encouragement, and prayers for our sweet girl.

January 15, 2018 Uncertainty

We had another busy day of therapies today, including acupuncture. Annadelle was much more cooperative today than she was yesterday. I think she may not have slept very well the night before and that may have contributed to her unwillingness to complete tasks assigned by her therapists toward the end of the day.

Today she was able to stay on task for the most part. She’s five, so of course she is easily distracted, but she does a lot better than I would imagine a lot of kids her age would.

Nothing remarkable happened in therapy unless you count our OT telling us that Annadelle’s right shoulder is extremely weak. Initially she thought it could be her core muscles that were keeping her from lifting her arm, but she asked another therapist to watch her and give her opinion. That therapist said Annadelle was definitely having difficulty with her shoulder, meaning we have to continue to work to increase strength in that arm. Our roomies suggested we ask for a consult from the brachial plexus injury clinic at Johns Hopkins so they can “score” her. I don’t really know what that means but I am going to ask about it tomorrow morning in rounds.

I have been speaking with our therapists about the best equipment to keep at home for home therapy so our PT provided us with a list of recommended items. Everything on the list is something that is used at KKI and can be used for sessions at home, something that will definitely help us since our outpatient clinic is over an hour away from where we live. Because of the cost and time of travel, we may have to consider cutting her outpatient therapies down to only a few days a week instead of every day like we had been doing, I had called Encore physical therapy on Canal Road in Orange Beach inquiring about transferring there, but the therapist cut me short and told me I needed to find a “developmental rehab” which I have been told is completely inaccurate. The therapist claimed she was very familiar with AFM, but I think she was confusing AFM with a different disorder. Anyway, hence the reason we are working so hard to have our own home gym.

The Amazon wish list can be found by clicking in the menu of this blog, then click “medical wish list”. I would share the link here, but for some reason the links do not transfer to the site when I am updating a post from my iPad.

Dr. Pardo, a pediatric neurologist at Johns Hopkins, is going to come and visit Annadelle on Thursday. He has treated and followed many AFM patients so I am curious to see what he says. His team has been hounding me about getting Annadelle’s MRI scans to him, but I wasn’t able to easily get them sent from USA Children’s and Women’s Hospital in Mobile where we were treated originally. Eventually his team was able to get them sent over.

Annadelle was scheduled to have her first school session today, but the teacher had written down the appointment time wrong so it began about half an hour late. I was not happy with the session because I clearly explained to the teacher what Annadelle needed to work on. Instead of doing what I asked, the teacher began to teach her about Martin Luther King, Jr. and asked her to read a small book about him. Like, she can’t read, so…not sure what she was thinking there. She was trying to get her to read words like “brotherhood” and “equality.” I eventually interrupted her and explained again that Annadelle could not read yet, that she only had a month of school prior to AFM and it had been hard for us to fit in much school time between medical care and therapies. The teacher then started rushing through the lesson and didn’t give Annadelle a chance to respond when she asked her questions. I ended up asking the nurse to take off education from our schedule which prompted her to call the supervisor. I wasn’t trying to cause trouble by any means, but I didn’t want to pack her schedule full with more stuff that wasn’t beneficial to her. I can do more with her on my own (which I have been doing as I get the chance), like having her practice letter sheets, writing her name, learning her sight words, and counting. I brought some school supplies with us to KKI so we are working with her as we get breaks. It isn’t much right now, but at least it is something. I think we will be able to catch her up before the end of the summer, God willing.

The stickies are placed on each leg above the knee. They are hard to see in this photo, but they are there.

Acupuncture therapy went about as well as I expected it to. Jeff, the acupuncturist, was great with her. He explained that we would be placing the “stickies” (we don’t use the word “needle”) on her spine because that is where the injury is. She doesn’t have complaints of pain much, otherwise he would place the stickies at the site of the pain. But because it was her first session, he didn’t want to begin on her back and instead placed one sticky on each leg. She jumped a little bit at the first one and started to cry, not because of pain but because of anticipation that it was going to hurt. She dried her tears quickly and let Jeff put another sticky on the other leg. She still jumped a little but laughed about it. He kept the stickies in for about 10 minutes before he removed them. He asked if he could come back on Saturday to put some more stickies on and she agreed, so I’d say it was successful even if the stickies weren’t placed here it would be more beneficial.

My boo bear is now snoozing soundly with her doll she made in therapy. I am so thankful to be able to kiss her goodnight, something I was terrified I would never be able to do again.

Thank you for all of the continued support. Without the love and encouragement of friends and family, I don’t know how well we would have coped over the last few months. Your support means more than you know.