When Tommy has his contact in we have to patch his "good eye" in order to make his "cataract eye" work hard. Babies LEARN to see starting at birth- and since Tommy's eye was covered in a cataract, that eye didn't start learning until he got his contact. The contact acts as the lens to focus images. He needs to use it in order for it to grow stronger. We are hoping that he will have at least some vision in that eye when he gets older.
We had ordered some patch stickers from a really cool website
http://eye-doodle.com/. This is a company started by a mom of a child with cataracts. When I came across this site, I just HAD to order them and support anyone who is trying to make it easier for kids who have to patch. As an added bonus, the owner has GREAT customer service. The patch stickers came quickly and were adorable!!!
We have to patch for 1-2 hours each day (we were told to do it 1 hour for each "month" he is old). He doesn't love the patch- but he does OK. It ends up being on for about 6-8 hours each day to get in 2 hours of awake time! The worst part is that it irritates his skin and leaves red marks. He also is on atropine drops right now to train his pupil to dilate. If I put the drops in and the patch on at the same time, he gets really frustrated since I imagine that he cannot see! If I do the drops early then patch a little bit later, it goes much more smoothly.
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| Tommy and his patch (complete with eye-doodle sticker!) |
Another not-so-fun part is explaining what "happened to his eye" to so many people. I don't mind them knowing, and I don't mind explaining. The only problem is that it is hard to explain an infant cataract in the limited amount of attention span that most people have. And, do people really care? I tell them anyway and just get amused when their eyes start to glaze over. Worse is trying to explain it to kids that we see at our daughter's activities. Interestingly, I have found that people are much more likely to ask me what happened if he has a cute patch on. If I don't put a sticker on the patch, they often look away and don't engage me in conversation.
I think they are worried that he doesn't have an eye. I have had some very uncomfortable conversations about this with strangers.
ReplyDeleteWhat a great site! My son also called Tommy was diagnosed with bilateral congenital cataract at 5 days old and we have been through a pretty rough journey with him since. He is almost 6 months old now and is doing fantastic. He was put to sleep 19 days old and then at 9 weeks had operation on his right eye and then his left eye at 10 weeks. The surgeon was brilliant and successfully inserted the IOL. It was a really difficult time and the drops post operatively seemed endless! At 12 weeks he got his first pair of sort contact lenses which needed changing daily which was horrific. He now has rigid gas permeable lenses which can stay in a little longer and is doing fairly well with them. He recently had another operation as he developed a secondary cataract so now we are battling with the patching. It is nice see and read other people's stories, as I have found where I live there are no support groups or anything.
ReplyDeleteI feel like I could have written this! I'm going through the same thing right now and what should take an hour of patching is an all day affair.
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