A huge bump in the road that we never saw coming

As most of you know Katie wears glasses. She was diagnosed at the age of 2 1/2 with Amblyopia, which is where one eye is significantly weaker than the other. For the past 2 1/2 years we have been patching Katie's good eye on and off, in the hope of strengthening her weak eye. Each time we have patched for a period of time her eyesight improved, only to deteriorate during the months that it remained unpatched.

Two months ago, her eyes had weakened again and the Doctor, who is excellent as well as a family friend, told us that we may have to patch again but that they would strengthen her lenses in the meantime in hopes that it would be enough of a fix that she could avoid the patch. We returned almost a week ago and as we sat and observed the exam, my heart sank. I knew that her eyesight had weakened further. The doctor was quite concerned and he dilated her eyes just to make sure that he was seeing the whole picture. When you dilate a young child's eyes, it is very difficult to really get the kind of visualisation of the eye structure that you get with an adult, since they cannot hold the eye positions needed for very long during the examination.

Marc and I had gone to the exam together (in separate cars) since I had to get to work earlier than he did and he was planning to take her to camp straight from the exam. Once the exam went longer, I left to get to work asking him to call me the minute that the exam was complete. The minutes ticked by and all of the sudden it was well over an hour since we were together. I knew something was wrong...I just felt it...

When I finally heard Marc's voice my fears were confirmed. The doctor was able to view the periphery of the retina and found evidence as to why Katie is not getting better. Unfortunately, it was not an answer that we wanted to hear. There were flecks of material on the far sides of the retina; yellow in color. His concern is that it is a condition that falls under a group of eye diseases called Retinitis Pigmentosa, that will lead to loss of vision and ultimately for many...blindness.

Our doctor has referred us to the best eye institute in the country, which is in our own backyard here in South Florida. The doctor who will be overseeing her case is also considered to be one of the best retina specialists in the world. Katie will be given a test under general anesthesia called an ERG (Electroretinography), which is like an EKG for the eye. It will be a two day process that is already scheduled and it will take place about a month from now. You cannot imagine the process it was to get it done that quickly.

Needless to say....we are VERY upset! We are keeping it together for the kids sake but my anxiety level is through the roof. Every time I think of this child, who takes such delight in every thing that she sees around her, losing that ability.... well....all I can do is cry. Katie lights up the world around her and all I want right now is for her to continue to see the light. If the news is bad once the test is complete, we will do everything in our power to try to find a way to forestall this from happening to her. If we cannot...then we will deal with that too. I cannot believe that I am even journaling this. It is like a bad dream that we cannot wake ourselves from.

I am actually doing so for three reasons; to keep a record of this for Katie and ourselves and to help me to process it; which I do through my writing and also to implore upon all of you to get your children screened early. Sadly, we have no knowledge of Katie's background and heredity. Many of the eye diseases that come under this heading are passed along through the genes. There is no way that you can know where there may be a problem unless you screen for it.

Finally, I ask that you say a prayer of you pray and if you don't, then to send your positive thoughts for our daughter. This is one more bump in the road for her; albeit a huge one. We need all of the friendship and love right now that we can surround her with. She knows nothing about this now and we will talk to her just before the test to prepare her for that. If our fears are realized once we get the results...we will deal with that too. I just don't even want to go there yet.......