In August 2017 we were getting the kids ready to start school, Kinzlie was going to be in Kindergarten and Boston was going to be in preschool. I decided to take them both into the eye doctor for a routine check up. My mom and sister had both made comments about Boston possibly having a lazy eye, and telling me his left eye wasn't tracking the way it should. I didn't think anything of these comments but thought I would take him in anyway.
When we got to the optometrist he did the normal eye test and noticed that when Boston covered his right eye he couldn't see anything. So, he decided to take some pictures of the inside of Boston's eyes. His right eye looked normal but when he showed me the picture of his left eye it looked like someone had spilt oatmeal all over the screen. It didn't look anything like an eye and it was at this point the doctor told me something was wrong with his left eye. He didn't know exactly what was wrong because he had never seen anything like this before. The doctor set us up with another team of doctors in Ogden. He said they would hopefully know what was happening and told us worse case scenario was cancer. My heart sunk. I didn't want to believe that my perfect little boy had anything wrong with him, let alone cancer. I was praying constantly until the next day when we went to the next doctor's appointment in Ogden.
The doctor's in Ogden did quite a few more tests with Boston and took more pictures of his eyes. At the end of our appointment they didn't have any answers for us and made us an appointment with some of the best ophthalmologist at Primary Children's Hospital in Salt Lake City. The week between these two appointments was one of the worst weeks of my life. I couldn't stop my mind from jumping to the worst possible scenarios for my sweet boy.
By the time we got to Primary Children's Hospital I was a wreck. Jordan and I didn't say anything to anyone about this situation, especially the kids. We didn't want them to worry so we were putting on a brave face for them.
The first doctor we saw at Primary Children's Hospital was Dr. Robert Hoffman who is the Chief of the Division of Pediatric Ophthalmology and Eye Muscle Disorders at Primary Children's Hospital. He and his team did more test and took more pictures and scans of Boston's eye. At the end of the day he said he thought he knew what was wrong but wanted a second opinion before he said anything to us. He then called Dr. Mary Elizabeth Hartnett who is a doctor of ophthalmology and vitreoretinal surgeon at the Moran Eye Center. She took a look at all of the test and was able to confirm that Boston has Coat's Disease which is a rare eye disorder involving abnormal development of blood vessels in the retina. This was such great news for us. We were so relieved that it wasn't cancer and that we finally knew what it was and had a coarse of action to help Boston.
At this point the doctor's set up a time to do some treatments on Boston's eye while he was under anesthesia. He has had laser treatments, a Vitrectomy (surgical procedure undertaken by a specialist where the vitreous humor gel that fills the eye cavity is removed to provide better access to the retina), and a few other procedures done to help stabilize and preserve his left eye. He will always be blind in his left eye but we are hoping to be able to keep his eye out of pain so that it won't have to be removed and replace with a prosthetic eye. He will also always have to wear non prescription glasses to protect his right eye (which currently has perfect vision). If anything were to happen to his right eye he would be left completely blind so we are taking every precaution to prevent that from happening.
Boston had an appointment with Dr. Hartnett this past week and we were told that his eye is stable and the retina is mostly attached which is a good sign. Boston does have a cataract on his left eye but since he doesn't have vision in that eye they aren't currently worried about having it removed. If it become painful for him or makes it difficult for the doctor's to see into the back of the eye then he might have to have surgery to have it removed. His next appointment will be with Dr. Hoffman in June for another check up.
Boston is such a strong little man. He has never once complained about his eye and has never let it slow him down. He has most likely lived his whole life with vision in only one eye and has never known anything different. He is getting so good and sitting still during his appointments and is a pro. getting eye drops put in his eyes.
We are so grateful that we caught this when we did and are so blessed to live so close to such great doctor's who can help Boston.
