We spent almost two months in the Children’s Hospital. There was a battery of tests that were run on her daily. They tested everything from her heart to HIV to ruling out a stroke. Ivy had several MRI’s and spinal taps which were positive for a lesion in her spinal cord. The doctors started her on steroids and IVIG treatments. When the doctors diagnosed Ivy with Transverse Myelitis, I was in disbelief. They also told me her type of TM was idiopathic because they do not know what caused it. They were able to find out that she had a virus, but her body attacked her spinal cord instead of the virus. As it turns out, this disease is very rare and even more rare in children. Research indicates that there are only 1400 new cases each year in the U.S with a total of 1-8 people diagnosed per million.
The long hospital stay was trying on our family. It got easier after a few weeks when she was moved to the rehabilitation floor and wasn’t poked and prodded all the time. She received extensive in-patient occupational, speech, and physical therapy. We were finally discharged when Ivy was able to wiggle her toes. This was a huge victory, but still very far from the crawling active baby before the hospitalization.
After leaving the hospital, we spent several years attending outpatient therapy. Ivy receives IVIG as needed to keep her immunity levels up. We do see some regression during times of illness. By the time she turned 3 years old, we felt like we had a good grasp on Ivy’s TM. There are a lot of ongoing specialty appointments and therapies that are needed to help Ivy become stronger and more mobile. However, Ivy’s issues did not stop there. We were back in the hospital when Ivy turned 3 years old as she suddenly became very clumsy and stopped walking. After several days, we learned that her bladder was enlarged and she was unable to void urine. Ivy underwent an additional battery of tests and has now been diagnosed with having a neurogenic bladder and colon. Ivy needs clean intermittent catheterization every two hours to void urine and we are looking into surgery to address her colon issues. Once again, as a family we felt helpless. My mind went to Ivy’s future. How am I going to tell my baby that she can’t use the bathroom? How is this going to impact her future relationships? And to make matters worse, it has been an uphill battle trying to find a preschool willing to take Ivy due to her catheterization scheduling.