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 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. We've been to three different ophthalmologists, a neurologist, and a geneticist; Ivan's undergone a VER, an MRI, an ultrasound of his kidneys, and too many blood draws to count. Most of his doctors assumed Ivan had LCA (Leber's Congenital Amaurosis), and that was confirmed with an ERG in July, 2006. We now know that Ivan definitely has LCA but we are waiting on more blood work to see if we can identify his gene mutation. (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. Ivan's social skills have improved tremendously since we've moved and he is enjoying his time at preschool more than we would have ever guessed.
We started WonderBaby.org as a way to share with others what we've learned about playing with and teaching a blind baby. Our goal is to create a database of articles written by parents for parents. No doctors or specialists 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.
