Since Clark’s initial eye surgery in December, he has had 4 more. One in January, March, April and June. Clark would not let the doctor look at his eyes during a regular appointment. In fact, Clark shut his eyes as tight as he could, and hid his head. Part of me was frustrated because Dr. Moore just wanted to see whether the bleeding had disappeared or not. But part of me was completely understanding, and sad for Clark. What 3 year old wants to be held down with a bright light shining in their face? Especially a 3 year old with light sensitivity?
After discussing with the doctor, we chose to put Clark under anesthesia again for a better look (January’s surgery). This would also give access to more lasering if necessary. As it turns out, Clark still had a little pooling of blood in his right eye (his “good” eye). It was much less than before. Dr. Moore could also see more open vessels where the blood had dried up, so he was able to laser a bit more.
This situation repeated for March, April and June’s surgeries. After Clark’s last surgery in June, we agreed to give it a break. Dr. Moore was fairly certain he had lasered everything necessary. And even though we couldn’t be 100% sure without putting Clark under again (or a forced eye exam), we decided to give Clark some extra time to get used to the idea of having the ophthalmologist take a closer look. Ophthalmology wants regular visits every 3 months, so we want Clark to enjoy his appointments…or at least, not be scared. There never seems to be an easy decision when it comes to my baby’s health, but we do the best we can under the circumstances. Thankfully we have a lot of faith in Dr. Moore. He is a specialist from London, and continues to actively seek out cases like Clark. Even other patients with DKC that have major eye complications tend to be different from Clark. Having a rare disease can be very complicated because it is so rare, that every patients problems and outcomes can differ.