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John was born on 12/12/12 at 12:12 p.m. His journey with transverse myelitis began when he was six months old.
In the weeks leading up to June 2013, John had battled a horrible cold and had an eternal runny nose. We made several trips to the pediatrician, where he had a high white blood count and was put on several antibiotics. He was finally getting better and on June 27, 2013, I put John to bed around 8:00p.m. When I left for work at 7:30 a.m. on June 28, 2013, he was still asleep and my husband was thrilled because our baby was sleeping in! Later that morning on June 28, 2013, I received a call from my husband, “John’s legs aren’t moving.” I told him that didn’t make any sense and to call the pediatrician (the thought of taking him to the ER didn’t even cross my mind). Our pediatrician’s office got him right in and sent him straight to the ultrasound department at Children’s Hospital at Erlanger in Chattanooga, TN. As I arrived at the hospital, John was screaming and moving his arms while the ultrasound tech examined him but there was absolutely no movement from the waist down, which was haunting.
We waited in a room and received news from the oncologist that there were no signs of cancer, and we were admitted to the pediatric ICU. The same day, the pediatric neurologist ordered high dose steroids thinking it could be Guillain-Barré, ADEM, or transverse myelitis. Then the tests began. John underwent two spinal taps, countless blood draws, and three MRIs. The MRIs showed no lesions on his spine but all signs pointed to TM. He was nursing fine, eating baby food, playing with toys, yet he couldn’t move his legs and showed no immediate signs of improvement after three days in the pediatric ICU. Our neurologist made the decision to transfer us to Vanderbilt Children’s Hospital in Nashville to confirm the TM diagnosis.
Upon admittance to Vanderbilt, we were greeted by the pediatric neurologist and his team of no less than six residents who poked and prodded on John’s legs and spine. After another MRI, they confirmed the diagnosis, Acute Transverse Myelitis. Then the news came that there was no “treatment” and no definitive prognosis; he might recover, he might not. The physical therapists recommended inpatient treatment but we opted to seek outpatient care at home. We were discharged from Vanderbilt on July 3, 2013.
Coming home with a paralyzed child was surreal, especially since his only symptom was paralysis, otherwise, he was happy and healthy. He was just a baby; he couldn’t walk, sit up, or talk to us before TM. He couldn’t tell us if he was in pain. The question was, what would his life after TM look like? John immediately began outpatient physical therapy at Children’s Hospital several times a week with a wonderful physical therapist. Within a week of discharge, he jerked one leg. Then little by little, week by week, he started to regain movement. By nine months old, he was crawling and sitting up on his own.
He was fitted for his first orthotics when he was 12 months. At 17 months, he stood and took his first steps, which was one of the happiest days of our lives. He was fitted for new orthotics when he was two years old, and then again at three years old. He has gone to physical therapy on and off over the last three years as needed. We see the neurologist every six months and are forever grateful for his fast diagnosis and administration of steroids within less than 12 hours of the paralysis.
Today, John does not wear any orthotics and never walks, he only runs! Every day, John deals with pain, muscle stiffness/spasticity, and weakness in his right leg. He still has trouble sleeping at night which we contribute to spasms and stiffness. It has been 3 ½ years since his diagnosis and there is not a day goes by that I do not think about his journey. He is an amazingly resilient little boy and doesn’t let any of his minor difficulties slow him down. It is a joy to watch how far he has come. Even with the diagnosis and continued treatment, I have such hope that transverse myelitis will only be a small part of his lifelong journey. I have no doubt that the countless prayers of friends, family, and people all across the globe contributed to his recovery. Our faith was the only thing that got us through those initial days, weeks, and months. My prayer for him is that he may touch the lives of others with his story as gets older. TM was not the end but the beginning of our family’s journey. John 5:1-9.
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