Nya’s Story

Nya really hit the jackpot, as she additionally has a mitochondrial mutation, heart murmur, poor vision, and bi-lateral hip dysplasia. She was diagnosed at about 9 months and has been in physical therapy since about 2 months old, occupational therapy since about 4 months. We have seen remarkable difference in her tone particularly in her arms. She still has very tight hips, grits her teeth, and only utilizes her arms in a tightening motion, so she unable to push buttons or reach. Her body is most often in flex, as seen in her feet/ankles. We manage her epilepsy with Kepra, Trileptal, and Baclofen. She still cannot hold her head up but we press on with tummy time! She maintains her rooting reflex, which is sort of being replaced by the biting, unfortunately. She sees over 12 doctors and therapists regularly, all managing different aspects of her conditions. She has a hard time with regulating a sleep pattern and often looks awake when her heart rate says she is sleeping. She is our happy, sweet, giggly, easily excitable baby. It is hard to know what her future might look like, so we just take it day by day and try not to limit what she can do.