Max's Results

Okay Dr. Neeley called this morning and I know some of you have been waiting for this, so I will do my best to explain it. Max had an eye exam and ERG (electroretinogram) under anesthesia on Tuesday. This was going to check the retina to see if there was further damage in the back on Max's eyes other than just his congential motor nystagmus (wobbley eyes) that he has had since birth. The results are that all parts of his retina are deminished. You have Rods in your retina that are good at "seeing" things that move, in the dark, black and white, less detail and mostly outer peripheral vision. You also have cones in your retina that are good at "seeing" things that are still, daylight, color, fine detail and mostly central vision. One or the other or both can be damaged. Max has both damaged. His optic nerve was also checked and that is basically the line between the brain and the eye. That seemed to be in good shape.

To put it in easier terms they us the anaylsis of a camera. The optic nerve takes the picture from the brain and the retina developes the picture for the eye to see. He is taking the picture but he cannot get it developed. He will also more than likely be color blind. It may be all colors or it may be colors that are similar that he will not be able to distinguish from. Hope that helps a little. This still does not tell us exactly everything that he can and cannot see but it correlates everything that I have said about his vision. Time will tell whether it will stay the same or get worse, however, at this time there is no surgeries that can be performed or cures. There is a possible surgery for his nystagmus that would tighten his muscles of the eye but will be looked at later down the line. This would not change his vision obviously just help reduce or stop the nystagmus (wobbly eyes).

Dr. Neeley suggested we have genetic testing done now. For those who don't know, my dad has very bad eyesight as well. Although he and Max have different diagnoses, I more than likely am a genetic carrier of something and testing will possibly give more answers. This will also tell us the chances of us having more children with this condition. Fortunately, Brock has shown NO signs of vision issues, but should be tested sometime just to check. This would also tell what chances Max has to carry it on to his children.

The major issues that he will have will be in the school setting. Special resources will have to be used for him, but it looks like he will be able to attend regular schooling. We are working with the School of Blind and the Low Vision Tech for Jennings County on getting him into preschool and they will come in and work with him and get materials he needs. They also said he will likely tire easily because he will have to work harder to see his work. Therefore, will probably have less paperwork to do than the average student. There is also the issue of driving, although several years down the road (thankfully), he may or may not be able to. However, a lot can change in 12 years as we have all seen in the medical field.

Please continue to pray for Max, although what he sees he thinks is normal because that is all he has ever known, he will have hurtles to jump. He is highly intelligent and I'm not saying that because he's my son, but because he can memorize things you wouldn't think and hear things and know what they are without seeing them. His other senses have definately kicked in without him even knowing the difference.

I know many have been praying for different results as I have been too. I thank you for that from the bottom of my heart. However, we know some answers now and we will work to help assist Max in anything he needs help with. If anyone is interested in knowing more that I did not cover please feel free to contact me. My friend Amber and I have also been doing research and you can get some info when you Goggle: Retinal Dystrophy or Nystagmus in Children. There is a lot to go through but I have covered the general information here. Thanks to Amber too for helping find info in laymens terms. I will keep you updated on the genetic testing and further happenings with our family.