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 receives multiple therapies several days a week. As of right now she gets physical therapy twice a week, occupational therapy once a week, speech therapy once a week, play therapy once a week and visual therapy 2 times a month. Haley is making great strides with the help of her therapists. She just learned to walk unassisted at nearly 3 years old, and is saying a few words.
We are actively involved in the Joubert Syndrome and Related Disorders Foundation, with many fund raising activities on our plates. We recently created a running charity called Jog for Joubert Syndrome. Joubert Syndrome is a very rare disorder therefore the donations and contributions we receive are small, but we are working tirelessly to change that.
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. laurabs24@yahoo.com
