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.