Thank you for visiting our family blog. This blog was first started when we first found out I was pregnant with Haley as a way to keep family and friends informed of her progress. We named the blog "See Bogey Grow" because Bogey was the nickname we gave Haley before we knew if she was a girl or boy. Haley is our first child, born February 29th, 2008 (Leap Day!). After a normal pregnancy, delivery, and first 6 months, we began to notice Haley was not meeting her milestones. She was not rolling over or crawling or pulling up to stand. We began to question our pediatrician when Haley was around 10 months old, and we were finally referred to a physical therapist. We credit that first physical therapist with helping point us in the right direction. She immediately recognized something was not right with Haley. We were then referred to a neurologist and pediatric opthamologist. Within weeks we found out Haley had Oculomotor Apraxia (abnormal eye movements) but still didn't know what was causing it. Haley had an MRI in April 2009 and by the end of that week we had our diagnosis.....Joubert Syndrome.
Haley is now in kindergarten and continues to receive multiple therapies several days a week. Haley is making great strides with the help of her therapists. She did not learn to walk unassisted until nearly 3 years old. She continues need help with some activities such as climbing stairs, jumping, and balancing. Her speech has come a long way, but is still does not have the typical speech of children her age. Haley loves her dance class, and wants to be a runner like her mom.
We are actively involved in the Joubert Syndrome and Related Disorders Foundation, with many fund raising activities on our plates. We created a running charity called Jog for Joubert Syndrome, and host an annual trail race in NC called Race for R.A.R.E.
Haley is the light of our lives and we are so blessed she chose us as parents. She has taught us so much in her short little life about perseverance, strength, patience, and the blessings is being "different". Thank you so much for stopping by, please feel free to contact us with any questions. firstname.lastname@example.org