Tomorrow will mark exactly 30 days since Nomaan had his second surgery. On the eve of our next visit to our second home for follow up testing, I wanted to take a few moments and reflect on the last two weeks.
When we first left Philadelphia, we had just started to notice Nomaan "discovering" his new found vision. Beenish and I didn't quite understand how and what was changing, and it was extremely difficult to get Nomi to describe things.
We did notice some immediate changes, as I mentioned in previous posts.
Since returning home, Beenish and I, along with our families, have seen more changes.
As an example, Nomi went to visit his grandmother, "Ammi". In her living room, she has always had an old gold table clock. My mom and dad both like to pray in that room, and usually, while they pray, Nomi plays by the end table where the clock sits. On his first day at their home since returning, Nomi noticed this old clock, but he saw it differently. He asked my mother when she bought the new clock. My mom told him she didn't buy a new clock. But Nomi insisted she did, and said "the old clock didn't have this white circle on it," as he pointed to the white face on the old gold clock.
This was one of the few times he said something that gave us insight to the improvements.
We have been able to watch him navigate much better. He has become more independent. Simple tasks that he once needed help with, he is able to complete on his own.
Nomi was never able to write in a straight line. He used to struggle with his hand writing. He was able to write letters and words, but it was inconsistent on the page. Within a few weeks, we noticed his hand writing improving, and he was able to write the words, following the lines of the paper.
The biggest change everyone has noticed is the sudden change in his personalty. Since returning home, he exudes a new found confidence. He is less hesitant, less fearful, and has become so much more outgoing. It's as if a switch went off in his brain, and he has completely come out of his shell. It's amazing.
This week, our CHOP family will run tests on Nomi again. They will be able to gather the data they need for the study, that will quantitatively show some of the changes. Beenish and I are especially excited to see Nomi navigate the mobility course. It was one of the few tests that we were able to observe, and it allowed us to somewhat understand his visual limitations in a different way. We watched him do the test twice before the surgery. It will be good to see him try the course again.
It has been an exciting time. With every passing day, things change for the better.
When we first left Philadelphia, we had just started to notice Nomaan "discovering" his new found vision. Beenish and I didn't quite understand how and what was changing, and it was extremely difficult to get Nomi to describe things.
We did notice some immediate changes, as I mentioned in previous posts.
Since returning home, Beenish and I, along with our families, have seen more changes.
As an example, Nomi went to visit his grandmother, "Ammi". In her living room, she has always had an old gold table clock. My mom and dad both like to pray in that room, and usually, while they pray, Nomi plays by the end table where the clock sits. On his first day at their home since returning, Nomi noticed this old clock, but he saw it differently. He asked my mother when she bought the new clock. My mom told him she didn't buy a new clock. But Nomi insisted she did, and said "the old clock didn't have this white circle on it," as he pointed to the white face on the old gold clock.
This was one of the few times he said something that gave us insight to the improvements.
We have been able to watch him navigate much better. He has become more independent. Simple tasks that he once needed help with, he is able to complete on his own.
Nomi was never able to write in a straight line. He used to struggle with his hand writing. He was able to write letters and words, but it was inconsistent on the page. Within a few weeks, we noticed his hand writing improving, and he was able to write the words, following the lines of the paper.
The biggest change everyone has noticed is the sudden change in his personalty. Since returning home, he exudes a new found confidence. He is less hesitant, less fearful, and has become so much more outgoing. It's as if a switch went off in his brain, and he has completely come out of his shell. It's amazing.
This week, our CHOP family will run tests on Nomi again. They will be able to gather the data they need for the study, that will quantitatively show some of the changes. Beenish and I are especially excited to see Nomi navigate the mobility course. It was one of the few tests that we were able to observe, and it allowed us to somewhat understand his visual limitations in a different way. We watched him do the test twice before the surgery. It will be good to see him try the course again.
It has been an exciting time. With every passing day, things change for the better.
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