Our Story
Ivan Kapi'i Bobnar was born June 11th, 2005. It was a difficult birth that ended in an emergency c-section. Soon after birth, Ivan was having trouble breathing, and, after hooking him up to monitors, we discovered that his blood oxygen saturation was low.
We spent the first week of Ivan's life in the hospital, then we were sent home with monitors, oxygen canisters, and medication. The doctors were confused but assured us that he would grow out of these respiratory problems (which included apnea and reflux) as his system matured. We were anxious for Ivan to become a "normal" little baby.
His breathing problems did pass, but by the time he was 2 months old and not focusing on objects we were worried about his eyes. We were told to wait until he was 3 months old. He still wasn't focusing and that's when the crazy stream of doctors' appointments began. Most of his doctors assumed Ivan had LCA (Leber's Congenital Amaurosis), and that was confirmed with an ERG in July, 2006. (You can read more about our ERG and diagnosis here.)
When we lived on the Big Island of Hawai'i, we would have to travel to the island of O'ahu for most of Ivan's tests and exams. But since medical treatment was so hard to come by in Hawai'i and since Early Intervention services were so difficult to attain (not to mention the fact that preschool and other educational services looked bleak), we decided to move to Massachusetts in 2007.
We have been very happy with our move. We now have access to some of the best doctors and hospitals in the world as well as top notch Early Intervention and preschool services. But, even better than all that, we also love living in a family-oriented community that offers public parks, story time at the local library, seasonal festivals, and many opportunities to get out and play with other kids.
In the summer of 2008 we attended an LCA conference and felt that Ivan, then three years old, just wasn't keeping up with his peers. So we began scheduling more doctors' appointments and tests and by late 2008 Ivan was diagnosed with Joubert Syndrome. We now know why his motor control and speech have been so delayed. We don't know what the future holds for our little guy, but we are determined to help Ivan be the best Ivan he can be!
We started WonderBaby.org as a way to share with others what we've learned about playing with and teaching a blind and disabled baby. Our goal is to create a database of articles written by parents of blind children. No doctors or therapists here—just real life advice and real life experiences. If you have an idea or article to share, please let us know! We'll post your article along with a picture of you and your child, if you wish.
