Small Changes

A friend asked me last night if Emily's eye looked bigger. At first I thought she was talking about how one eye looks bigger than the other. But then I realized that she meant 'Does her eye look bigger than the last time I saw her'. I tried getting a good look at it but couldn't, she just is so active and doesn't sit still very long anymore so my best guess was to say "yeah, it probably is".

Sometimes when people ask if her eye is bigger, I know they are referring to her left eye looking larger than the right because the area where the graft is, is much larger. Typically children with glaucoma do have eyes that are larger than normal and even one that is smaller than the other. So far I think Emily has maintained a relatively normal size eye, with the exception of before the second transplant in her left eye when her pressure was high. At that point she had (for lack of a better word) areas that would 'bubble' out, those were the weak areas at the top of her cornea. It was horrible to look at and sometimes it would make me physically sick to my stomach. Not because it grossed me out, but mainly because I was scared for her and knew that those areas were very thin...what would happen if those areas ever broke open? It would be a disaster for her. After each surgery it would flatten out, but then slowly would start to bulge out again.

Since her cornea surgery back in June, I have not seen anything close to what we were used to seeing in her left eye. Maybe I was overlooking it? Maybe I saw it but never acknowledged it because the doctors always said she looked ok? I see her all day, everyday and maybe I simply just didn't notice the change because it has occured so slowly and it wasn't as noticeable as it was in the past. People who don't see her everyday can pick up on how different she looks more easily than I can. I guess it's kind of like when someone tells you that you look like you have lost weight, but you haven't noticed it yourself...small changes go un noticed until someone else points them out.

First thing this morning I took a good look at her eye and yes, I see it does look like it's started to bulge out again. This time it's her whole eye, not just the weak areas at the top of her cornea. It's more noticeable when she looks down or closes her eye because you can see the difference in how large her eye lids are. My heart sank, but I knew that the pressure was still elevated and didn't expect the Pilocarpine to really work any kind of miracle, so it's not a surprise. Thankfully we go to see Dr. Kane tomorrow and I can voice my concern to him right away. If she needs the surgery for the second valve, I want her to have it as soon as possible. The higher pressure can compromise her new cornea and she can't afford to have this one reject just because of the glaucoma. She is doing so well right now visually and I don't want that to change.

I'm thankful that my friend pointed this out to me, otherwise I might not have been so aware of what was happening. Hopefully now I can push Dr. Kane to go forward with the surgery sooner than later.

I hate that this is a never ending battle.