Nomi completed the mobility course yesterday for the first time since his procedure. He also did an eye chart to test acuity again. These are the only two tests that Beenish and I can observe and actually "see" his changes.
In terms of acuity, there has been no change. His eye chart results have been exactly the same as they were before the surgery.
The mobility course told a different story. Before I tell you how it went, I want to put it into perspective.
The mobility course is a black and white grid, with arrows and black and white obstacles on it. Subjects walk the course, following the arrows, trying to avoid the various obstacles. They do this 3 times for each level of light, using the left eye alone, the right eye alone, and both eyes together.
For the sake of understanding, the light in the room is on a dimmer, and can vary on a scale of 0 to 20. This is an arbitrary scale, so I can explain Nomi's performance better.
If I were to do the course, with normal vision, I could probably do it at a 2 or 3. At a 1, I could probably see the obstacles, but maybe not the arrows. At 0, I would not be able to see anything. At 20, it would be so bright, I would need sunglasses.
By navigate well, I mean make it to the end of the course, completely unassisted, without bumping into a single obstacle.
In Nomi's case, pre surgery, he struggled. They started the light at maybe 10. They slowly went up by 1 every 3 runs of the course. With his left eye alone, he could not navigate the course until about 17. With his right eye alone, and both eyes, he managed well at around 14. He still had issues with depth perception, even at 20, and never managed to handle the steps without using his feet to "feel" them.
Yesterday, they set the course up as normal, and began at a 10. Nomi breezed through course. He did so well that Dr. Dan had to ask Nomi to slow down. Rather then increase the light as they had done before, Dr. Dan and Sarah lowered the light. There was only one setting lower than 10 that the lighting scheme allowed, and that was about a 7. Again, Nomi had no issue with the course.
What he once couldn't do at a 17, he did at a 7!
As I watched him successfully complete the course, I can honestly say, I was extremely emotional. I am man enough to admit, I cried. My son, who has always struggled with a task that we all take for granted, walked around a dimly lit room, and he didn't trip, fall, bump, bang, or hurt himself.
Even as I sit here now and think about it, it illicits the same emotion. I am absolutely elated and thankful. It's a miracle of science and faith.
I am thankful to God, for blessing us with our beautiful family and for this opportunity. I am also thankful for the team at CHOP (Kathleen, Sarah, Dominique, Dr. Bennet, Dr. Maguire, Dr. Dan), whose hard work has developed this technique.
I pray that Nomaan continues to benefit and improve. I pray that this technique becomes available to other families as well. Ameen.
In terms of acuity, there has been no change. His eye chart results have been exactly the same as they were before the surgery.
The mobility course told a different story. Before I tell you how it went, I want to put it into perspective.
The mobility course is a black and white grid, with arrows and black and white obstacles on it. Subjects walk the course, following the arrows, trying to avoid the various obstacles. They do this 3 times for each level of light, using the left eye alone, the right eye alone, and both eyes together.
For the sake of understanding, the light in the room is on a dimmer, and can vary on a scale of 0 to 20. This is an arbitrary scale, so I can explain Nomi's performance better.
If I were to do the course, with normal vision, I could probably do it at a 2 or 3. At a 1, I could probably see the obstacles, but maybe not the arrows. At 0, I would not be able to see anything. At 20, it would be so bright, I would need sunglasses.
By navigate well, I mean make it to the end of the course, completely unassisted, without bumping into a single obstacle.
In Nomi's case, pre surgery, he struggled. They started the light at maybe 10. They slowly went up by 1 every 3 runs of the course. With his left eye alone, he could not navigate the course until about 17. With his right eye alone, and both eyes, he managed well at around 14. He still had issues with depth perception, even at 20, and never managed to handle the steps without using his feet to "feel" them.
Yesterday, they set the course up as normal, and began at a 10. Nomi breezed through course. He did so well that Dr. Dan had to ask Nomi to slow down. Rather then increase the light as they had done before, Dr. Dan and Sarah lowered the light. There was only one setting lower than 10 that the lighting scheme allowed, and that was about a 7. Again, Nomi had no issue with the course.
What he once couldn't do at a 17, he did at a 7!
As I watched him successfully complete the course, I can honestly say, I was extremely emotional. I am man enough to admit, I cried. My son, who has always struggled with a task that we all take for granted, walked around a dimly lit room, and he didn't trip, fall, bump, bang, or hurt himself.
Even as I sit here now and think about it, it illicits the same emotion. I am absolutely elated and thankful. It's a miracle of science and faith.
I am thankful to God, for blessing us with our beautiful family and for this opportunity. I am also thankful for the team at CHOP (Kathleen, Sarah, Dominique, Dr. Bennet, Dr. Maguire, Dr. Dan), whose hard work has developed this technique.
I pray that Nomaan continues to benefit and improve. I pray that this technique becomes available to other families as well. Ameen.
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