Confirmation of our worry

The ongoing suspicion something was 'not right' with Gavin and his eyes, like I said were present to me at birth. Troy thought I was crazy, and he chalked it up to the morphine I was on. Gavin's monthly well visits to the pediatrician, didn't pose any initial red flag, as his eyes dilate and react to light. The nystagmus we were noticing, as well as his increased lack of tracking my finger, objects, light, etc. Each week, as newborns eyes are to get stronger and more aware of their surroundings, Gavin's interest in these activities were close to non-existent. I brought it up to his pediatrician, and he wanted to give it to the 4 month mark. I could not wait any longer. I took him back at 3 months, and we saw the Pediatric Opthamologist 2 weeks later, Dr. Shivaram on Feb. 3rd.

Dr. Shivaram confirmed our worry. During our visit with him, we found Gavin has lesions on his retina. These lesions are on the macular area of the eye. The macula, is the centermost part of the eye used for central vision. He also noted a small optic nerve. Since his findings were concentrated on the retina, he referred us to a Pediatric Retina Specialist at UCLA Medical Center. He also wanted Gavin to have blood tests done to rule out the possibility of him coming into contact with an infection, toxoplasmosis to be exact. He also ordered an MRI to see if anything else is going on at the base of the optic nerve and/or brain. This Dr was so sweet, but did not sugar coat anything. He told us straight up, and I could sense in his voice and his face, it was very difficult to give us the devastating news. He kept repeating, how deeply concerned he was for our son. I sensed in his tone, the prognosis did not seem promising. There is no surgery to "remove" these lesions. The lesions are in fact, more like the cells did not develop in that part of the retina, it's almost atrophied.

I could barely drive home from the appointmet. My heart in my stomach, and my son's life was flashing before me. His life, in the sense of wondering what the quality of his life will be, will he ever be independent, etc. That evening, I was lost. Troy and I were both completely lost. I could barely get through the phone call to my mom and dad to give them updates. I felt so empty, alone, and overwhelmed. Where do we start? How do I help him? How can I help him today with his development? The questions were endless, and the worry was growing.

Two days later, we had an appointment with one of the top Pediatric Retina Specialist in the country, Dr. Thomas C. Lee, director of the Retina Institute at Childrens Hospital Los Angeles. How we got into contact with this man, is a story in itself. Troy had shared the news of our son, with the amazing friends at his work, and they all rallied to help and show support for our family. It's amazing how many people are truly concerned and loving towards my son and my husband. I am beside myself to know when Troy walks into his work everyday, he is amongst his second family. It's nice to know you work for a company that instills those family values, and nice to know their support is there for him. I am truly thankful for every one of his coworkers/friends, and am blessed my family is in their company on an everyday basis.