It has been 16 days since Nomaan had his surgery on his left eye, and 9 days since his surgery on his right eye.
It has been an interesting time. The first 24 hours after each surgery, he had to keep his eye patched. Then for 14 days after each surgery, he had to patch his eye while he slept. There was a 7 day overlap in which both eyes were patched at night.
These patches are not soft patches, but rather a piece of perforated metal, none as a shield, that needs to be held in place with tape. Needless to say, they can be a bit uncomfortable.
In terms of results, as I have mentioned previously, the effects can take anywhere from 7 to 14 days after the surgery of the second eye. The benefits also "max out" at 30 days, meaning that no additional benefit is seen. Also, at his age, it can be difficult to verbalize what changes, if any, he is experiencing.
As his parents, we have been hyper sensitive in the hopes of noticing something. And so far, we have noticed things. Some more significant than others.
After his left eye surgery, 4 days later... we were in a sunny parking lot. Nomi looked at Beenish and said: "your hair looks different." Obviously, this could mean a number of things, and it was too soon to tell. But I made mental note of the comment.
About 3 or 4 days after his second surgery, he asked for noodles. I stepped out to pick them up and he came along. It was already dark. for those of you who know Nomi, despite the level of light, Beenish and I usually have to tell him to beware of an upcoming step or change in road, otherwise he would tend to trip. On this day, I forgot to tell him, and noticed that he just stepped up and down the curb while crossing the street, and he didn't need me to tell him. To test if it was just a fluke, I started to walk off and on the sidewalk over and over again. Mind you, we were hand in hand... was he following my lead, or was he actually seeing the curb now? Again, too soon to tell... but definitely promising.
My aha moment came This past Wednesday. We were at dinner, in a fairly dimly lit restaurant. Usually, we would point out to Nomi what food was where. We would watch him touch his food as he ate. He knew what food was where by using his sense of touch. He would never look down at his plate. He simply could not see it in restaurants such as these. Most nights, he would get frustrated, and Beenish and I would end up helping him eat or feeding him.
This night was different. They brought out his go to meal, whenever we eat out: chicken strips, fries, mac & cheese, and ranch. I was tucking a napkin into his shirt, and before I could tell him or help him start eating, he started on his own. I watched for a bit, as he picked up his fork and dove right into his noodles. I wanted to be sure, it wasn't just luck, and that he was actually seeing his food. I told Beenish what was going on, and as she watched, I signaled to her to distract him. Once he looked away, I rotated his plate 180 degrees and moved his fork. Now all the food was in different places. He took a drink, reached down, picked up his fork and started eating. Once more, I wanted to be sure. So Beenish distracted him, and I moved his plate 90 degrees and moved his fork again, Like before, once he went back to eating, he picked up his fork and "saw" his food.
This is a huge improvement. Beenish and I were awe struck. We couldn't believe it.
Finally, today... at dinner, Nomi said " Daddy - you were sleeping. I had to use the potty... and my patch was on and the lights weren't on, but I could see the potty with my left eye."
I got so excited, I turned a few lights off, and started asking him to tell me how many fingers I was holding up. I left enough light on so that I could see... and started asking. He was getting them right... being his father, I know that prior to the procedure, in that amount of light, there is no way he would have been able to do it.
It's working Alhumdullilah. I know it in my heart. I see it. By the grace of God, through the gift of science, and the hard work of many brilliant people, the therapy is working. Its starting off slowly, but we see a difference. Its amazing to experience this with him. It has been 9 days so far, and there are still 21 more days left for him to improve Inshallah.
Watching these baby steps, which may seem insignificant to some, brings tears to my eyes. Tasks that are so simple to the sighted, are often times very difficult to those with visual impairment, especially while also young. These were always things that Nomaan struggled with. It makes me so happy to see him overcome these challenges, even if they are slight.
It's miraculous. There is no better way to describe it.
It has been an interesting time. The first 24 hours after each surgery, he had to keep his eye patched. Then for 14 days after each surgery, he had to patch his eye while he slept. There was a 7 day overlap in which both eyes were patched at night.
These patches are not soft patches, but rather a piece of perforated metal, none as a shield, that needs to be held in place with tape. Needless to say, they can be a bit uncomfortable.
In terms of results, as I have mentioned previously, the effects can take anywhere from 7 to 14 days after the surgery of the second eye. The benefits also "max out" at 30 days, meaning that no additional benefit is seen. Also, at his age, it can be difficult to verbalize what changes, if any, he is experiencing.
As his parents, we have been hyper sensitive in the hopes of noticing something. And so far, we have noticed things. Some more significant than others.
After his left eye surgery, 4 days later... we were in a sunny parking lot. Nomi looked at Beenish and said: "your hair looks different." Obviously, this could mean a number of things, and it was too soon to tell. But I made mental note of the comment.
About 3 or 4 days after his second surgery, he asked for noodles. I stepped out to pick them up and he came along. It was already dark. for those of you who know Nomi, despite the level of light, Beenish and I usually have to tell him to beware of an upcoming step or change in road, otherwise he would tend to trip. On this day, I forgot to tell him, and noticed that he just stepped up and down the curb while crossing the street, and he didn't need me to tell him. To test if it was just a fluke, I started to walk off and on the sidewalk over and over again. Mind you, we were hand in hand... was he following my lead, or was he actually seeing the curb now? Again, too soon to tell... but definitely promising.
My aha moment came This past Wednesday. We were at dinner, in a fairly dimly lit restaurant. Usually, we would point out to Nomi what food was where. We would watch him touch his food as he ate. He knew what food was where by using his sense of touch. He would never look down at his plate. He simply could not see it in restaurants such as these. Most nights, he would get frustrated, and Beenish and I would end up helping him eat or feeding him.
This night was different. They brought out his go to meal, whenever we eat out: chicken strips, fries, mac & cheese, and ranch. I was tucking a napkin into his shirt, and before I could tell him or help him start eating, he started on his own. I watched for a bit, as he picked up his fork and dove right into his noodles. I wanted to be sure, it wasn't just luck, and that he was actually seeing his food. I told Beenish what was going on, and as she watched, I signaled to her to distract him. Once he looked away, I rotated his plate 180 degrees and moved his fork. Now all the food was in different places. He took a drink, reached down, picked up his fork and started eating. Once more, I wanted to be sure. So Beenish distracted him, and I moved his plate 90 degrees and moved his fork again, Like before, once he went back to eating, he picked up his fork and "saw" his food.
This is a huge improvement. Beenish and I were awe struck. We couldn't believe it.
Finally, today... at dinner, Nomi said " Daddy - you were sleeping. I had to use the potty... and my patch was on and the lights weren't on, but I could see the potty with my left eye."
I got so excited, I turned a few lights off, and started asking him to tell me how many fingers I was holding up. I left enough light on so that I could see... and started asking. He was getting them right... being his father, I know that prior to the procedure, in that amount of light, there is no way he would have been able to do it.
It's working Alhumdullilah. I know it in my heart. I see it. By the grace of God, through the gift of science, and the hard work of many brilliant people, the therapy is working. Its starting off slowly, but we see a difference. Its amazing to experience this with him. It has been 9 days so far, and there are still 21 more days left for him to improve Inshallah.
Watching these baby steps, which may seem insignificant to some, brings tears to my eyes. Tasks that are so simple to the sighted, are often times very difficult to those with visual impairment, especially while also young. These were always things that Nomaan struggled with. It makes me so happy to see him overcome these challenges, even if they are slight.
It's miraculous. There is no better way to describe it.
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