30 January 2011

Strange things are happening

To borrow a line from the great movie Toy Story, this is my life today. We are closing a chapter. A chapter that has been a part of life for so long, I am not sure how to do things without it. It is hard to change course when you have done something for so long. For seven years Trevor has been dealing with his eye issues. It started when he was little and he was watching tv and John noticed his eye floating all over the place. We go to an eye doctor in Paducah and they say that they cannot help us and send us to a specialist in Carp Griardeau, MO who scares us to death by telling us that he will go blind in that eye if he does not have surgery. She even schedules it for the next week. We can't do that with a $2500 deductible...NO WAY....I start seeking options. I mention at church for them to pray for us because we did not know what we were going to do. A member is with the Lion's Club and he says that they may can help us. My friend Rhonda told me this was a great avenue to pursue so off we go. This guys name is Tom and he said we had lots of options, the first being to go see their doctor in Louisville, KY at the Lions Club Eye Clinic. They would even sponsor Trevor to help out with cost, because our insurance was so bad. So off we go....when we first met Dr Paul Rychwalski, I thought, he is so young. I had done research on him and supposedly he is VERY good, but I expected him to be older. All he does is deal with people with children and their eye disabilities and diseases. It was a very comforting environment. It did not take Dr Paul and his assistant long to determine that Trevor had a binocular vision disability and Amblyopia strabismus (lazy eye and misalignment). He would never be cured and would need therapy. I asked about the blindness and surgery and he said "Trevor is not a candidate for surgery because of what he is facing...not at this time" He immediately put us on a harsh (yes harsh) therapy of eye patching. Eye patching is a nightmare to parents. The child does NOT want to wear the patch, doesn't understand why they have to wear the patch and because you are patching the good eye, there is NO depth perception and the vision is whacked up. Who wants to go through that? Especially for 6 hours per day? WOW!!! We did it though (thanks to the preschool teachers who helped us out on this), and returned after 6 weeks, with good progress. It was GREAT progress actually, Dr Rychwalski was proud of Trevor and said he could tell we were patching. He prescribed more patching.....

Our life over the next few years has been full of patching and an eye drops...Atropine. It was a scary thing to do because I have heard that it can damage the good eye. Also, it allows more sunlight to enter the eye so that it can cause cataracts and other vision issues. You are putting chemical in the good eye to blur it so the bad eye has to do the focusing. I actually hated the atropine, but Trevor tended to prefer it. Mainly, because his friends had NO idea that there was "something wrong with him". We have had to be very careful with the atropine because we go to theme parks a lot, he plays outside sports and he is a boy and they like the outdoors. I still don't know when we will be able to tell if he has damage because of the sun.

Trevor has gone to the eye doctor every 6 weeks or so for almost 7 years. Because we knew he would never be cured, that we were just getting him to the best that we could get him, our goal was set kind of low....20/50 with visual aids. That means he can read the 20/50 line with the glasses on his face. It has been a back and forth emotional journey....20/70 at the worst and 20/30 at the best. Dr Rychwalski had been so pleased with his results and our determination to help Trevor the best that we could, he let us start seeing a local doctor in 2005. Dr Jeff Taylor. He has been a little bit of wonderful for us as well. He has taken Trevor's goal on as his own. When Trevor was not doing well, he too would get upset about it. When Trevor did well, he was just as excited as we were. I have recommended him to everyone that I know looking for an ophthalmologist because he is so wonderful. He has taken Trevor's concerns to heart as if Trevor were an adult, and this speaks volumes to me. He has been wonderful with my little boy.

Dr Taylor said it was coming, he has warned us for a long time...around the age of 8 Trevor's eye would stop growing and there would be nothing else that we could do. Here we are, age 8 and Dr. Taylor wanted him so badly (right on with us) to read that 20/30 line (that was sort of a secret goal)....Trevor could not do it. We went to the dr last Friday and he said "stop using the drops." This is it the end...20/50 is the best Trevor is going to do. Yes, it is the goal, he will be able to drive a car, it is just bittersweet. There is nothing else we can do to make it better. Trevor really knows no life outside of eye therapy. It is going to be strange all his life we had to put the patch on or drop the drops.

Let me explain his life...He has had to cover up an eye that sees perfectly. Therefore, his vision has been a constant blurry out of alignment mess for almost 7 years. He has never seen a baseball coming at him as his teammates have, he has never read a book like other people, he has never watched tv where he didn't angle his head to be able to see better. I am so proud of the things he has accomplished under these circumstances, he is a great student, he is a very good baseball player (when his bad eye will work like it is supposed to), he is not afraid to try new things, and doesn't know the meaning of "I can't see so I won't do it". He gets out there and tries and most times, he succeeds.

Now that we are at the end, we have to make sure that we have not damaged that good eye. That poor eye has been through a lot over the last 7 years as well. It has had to turn itself off, be covered up and blurred so it could not see a thing. Have we damaged it under all this therapy? Actually that is a possibility. We have finished with all therapy! A hard concept for me to grasp. Trevor is having no issues there. Now we go back in 4 weeks to see if the good eye is ok. To make sure there is no damage. Are we finished going to the eye doctor all the time? We don't know yet. Is this eye going to be ok? We don't know yet. Will he ever need eye surgery on the bad eye? We don't know yet. But I will tell you, it will be nice to not have to go to the eye doctor every other month, it will be nice not to have to use eye drops, it will be nice not to have to put on an eye patch, it will be very nice to see how he hits a baseball using NO therapy. I think I look forward to that...yes I know I do. Now that the good eye will be able to use the depth perception that it has...he may really have a great season.

Trevor has been great through all of this. Yes, he has screamed and cried and ran away from me because I had to do stuff to his eyes, but gosh Trevor it's over. I am proud of you for being such a good boy at the eye doctor all these years, I shall miss playing eye spy with you while we wait for Dr. Taylor. I shall miss playing jeopardy with you in the waiting room. I shall miss buying you a hamburger because you have been such a good boy. I shall miss the nurse saying "why do you never want a sucker?" to you. But I am glad that you will be able to drive a car one day and your mama won't have to drive you and your girlfriend on dates. Yes, that part makes me happy. I don't want to be toting you around when you are 50, I am glad that you will be able to drive and you can tote me around.

Thanks to the doctors who have helped us over the years...Especially to Dr Paul Rychwalski, who was willing to try hard to make my babies life better without putting him under the knife. Thank you for all that you and Dr Taylor have done for my little boy.