Piper Faith Nelson was diagnosed in-utero with Hydrocephalus-they were wrong. When she was born, they said everything was totally normal-they were wrong. After her first MRI at 17 days old we were told she had enlarged ventricles but would be totally fine and lead a normal life-they were wrong. At 5 months old, we noticed she was not watching her mobile…2 days later she was diagnosed legally blind. At 6 months old she was diagnosed with Cerebral Palsy. The quote from the doctor was “she will never walk, she will never talk, she will be strapped down by velcro in a wheelchair and you might as well just write her off!”
Her seizures began at 6 months old. With all my medical training for coaching and work, how was I never trained on seizures? The first 911 call can’t truly be explained. The lack of knowledge, the tears, the panic while staying calm, the sheer terror. The pit in your stomach…will she survive? Handing her tiny body to the paramedics as you watch and do nothing but cry.
Eventually, Piper was diagnosed with Congenital CMV. A stupid virus I caught when I was pregnant. From who? We had never even heard of CMV, yet it is so prevalent, doctors don’t even test for it! A friend? Did I share a drink, or take a bite and sentence my daughter to this life before birth? We will never know.
The seizures increased, the milestones were missed. But we would not quit. After eye surgery, her vision improved. We help a fundraiser for a trip to POLAND for therapy-they got her WALKING in 2.5 weeks! (Euromed in Poland, or Polfit in Anaheim, CA). Horseback riding improved her strength, her smile improved ours. But the seizures kept coming.
Drugs were increased, drugs were decreased, drugs were added…again, and again, and again. We maxed out on dosages and started new drugs. Our little spitball that would never walk THAT WAS WALKING, our beautiful and spunky daughter was becoming a zombie.
At 12 years old, we have been through more than 20 different drugs and combinations. She is currently on 6 different medications with side effects that would make any normal person crazy! Because Piper is non-verbal, we don’t know when they make her tummy hurt-we just clean the vomit. We PRAY for they day we can introduce Charlotte’s Web, for the day we can take some of these drugs that are killing her liver and toss them out! One day-THE DAY that our little girl comes back to us!