On February 8 2016, my two-year-old daughter Kayla suddenly became weak and lost use of her arms and legs within a matter of 15 minutes. She was not ill and had no symptoms prior to falling down and becoming limp. We took her to the ER where they did different tests and then transferred us to another hospital an hour away. They did an MRI and that is when they diagnosed her with Acute Flaccid Myelitis (AFM). It took a few days as they wanted to rule out any other possible causes but seemed to know what it was the first day we were there and they did the MRI.
Her condition deteriorated over the next month requiring intubation and a ventilator. Kayla then had a trach put in as well as a feeding tube. She was like a newborn baby needing support on her head and body when being carried. Her bladder function was affected as well requiring us to catheterize her four times a day to protect her kidneys which were found to have fluid in them. She spent three months in the PICU.
We have been home now with her for close to five months. She is a quadriplegic, unable to sit, stand, or walk. She has had some improvements. She has not used the ventilator for two months now and we are going to be removing the trach next week and hopefully she will prove that she doesn’t need it. She has been cleared to eat by mouth but she is not interested so that has been a struggle. Her neck control is stronger now and she can move her shoulders.