Lucy’s medical story could begin when we noticed, during the first days of her life, that she showed a peculiar tension in her legs. She would lie on her back, but keep her legs slightly raised in constant extension. People would comment that they’d never seen a baby do that. We’ve come to learn this behavior to be a neurological condition which was beyond her control. Her brain wasn’t properly communicating with her muscles to allow for control of movement. We can point to other early signs. Breast feeding and diapering were difficult and Lucy cried more than her fair share. What became known as ‘colic’ didn’t subside at the usual time. And right around the same time we started to wonder about her vision, we began to see patterns of repetitive movement. We were directed to our first ‘precautionary’ EEG that, in fact, detected seizure activity in Lucy’s brain. Soon began her first round of tests. Lucy has been tested to the current extent of our medical community. She has had MRI’s, EEG’s, an EKG, a muscle biopsy, blood work and a spinal tap. None of these tests has lead to a diagnosis that points to a cause. However, we know that most of Lucy's problems stem from the fact that her brain doesn't work the way that it's supposed to. And the brain, being the important organ that it is, affects many things. The troubles in her brain are the reasons why Lucy has seizures, why her brain is not producing enough myelin (white matter, needed for quick transmission of messages), her vision is in question, she has difficulty controlling body movements, and why she has trouble handling the information (sensory input) from the world. All of these things come together in a fairly perfect storm to threaten her ability to grow, learn and progress. So, currently we treat Lucy’s symptoms. Lucy receives therapy for her physical and sensory limitations, and medications for the seizures. On occasion, she has received cranial sacral therapy, aquatic therapy, music therapy, and we’re still looking for therapies. She recently began a program at Cincinnati Children’s Hospital that is a wonderful combination preschool/therapy. There, she works with early forms of communication devices as well as on building social and daily living skills. As parents, we do lots of reading and talk to as many people as we can. One of the hopes for getting the word out is that the more people who know about and are thinking about Lucy, the better chances of someone making a connection that could potentially help her. It is important to know that Lucy has come a long way. Given her hurdles, she continues to finds knew ways to play, enjoy herself, and express the things that she clearly has to share with the world. Lucy’s family and friends are continuing to learn knew ways of understanding Lucy, helping her realize her potential, and sometimes, restraining ourselves from helping too much. We truly have no idea what her potential is. We are just going to try to be patient and enjoy what we can from the ride, because the rewards are big, she’s really cute and easy to love.