Wow! What a first day.
We arrived at CHOP just before 7:30. The place is amazing. Huge, well kept, state of the art.
Kathleen greeted us at the entry, and our day was off to a fast start.
Now, keep in mind, even though this is a children's hospital, some of the tests performed are difficult for kids.
All in all, Nomi did well. He had his moments of course, but I was honestly surprised at how well he did. He soldiered through the day.
The first part of the day had us meeting with Dr. McGuire, Kathleen, and Dominique. We had to go over the informed consent in detail. It's is an important step during a trial. It's our chance to really ask questions before we get started. We can always ask questions at any time, but it's important to really understand everything before they begin.
Once it was done, it was off to the mobility testing with Dr. Dan, Dominique, and Sarah. This is essentially a large obstacle course. They start off by keeping Nomi in a dark room, with his eyes covered to get them acclimated to the dark. They then have him walk the obstacle course in three sets, both eyes, left eye, and right eye. Each set is done at a varying level of light, starting very low and slowly working it's way up. They have to change the obstacle course each time so that Nomi can't memorize it. It was really neat for us to see. You really got a sense of how much light he needed and the difference in his vision between both eyes.
There were other tests throughout the day, using many fancy, expensive machines, whose names I have already forgotten. Some required a lot more cooperation from Nomi than others, and as any parent can attest, at age 5, sometimes cooperation and attention are hard to come by.
The worse parts of the day were mainly the eye drops to dilate his pupils, the blood draws, and believe it or not, the informed consent. I thought he was intensely focused on his iPad... But he was also listening, and every time we mentioned something he got a little scared, and after Dr. McGuire left, he had an epic meltdown and hid under the table.
The little extortionist was able to get quite a huge sum of bribes out of Mom and Dad to get out from under there... I think I've promised him almost $250 worth of stuff and I had to let him drink All the coke he wanted today. I think he has a future in business.
For me, personally, lunch was the toughest part of the day. We ate at the cafeteria, and as I looked around the room, it really hit me how blessed we are.
We are blessed, because we have this phenomenal opportunity. But as I looked around , and saw so many ill children, from all over the world, I felt even more blessed. Even though his vision is severely impaired, he is still a healthy, happy little boy. The families there were going through things even harder then we were.
After a 12 hour day, we are exhausted, mentally and physically. We are glad to have completed this step. God willing, these tests will reveal what needs to be so that he makes it. In 14 or or more days, the data will be compiled, and they will let us know.
We have a few more tests tomorrow, and then we head home.
I'll be posting some of the many pictures I took of the various procedures. In some cases, I was not able to or not permitted to take photos. But I will post what I can.
We arrived at CHOP just before 7:30. The place is amazing. Huge, well kept, state of the art.
Kathleen greeted us at the entry, and our day was off to a fast start.
Now, keep in mind, even though this is a children's hospital, some of the tests performed are difficult for kids.
All in all, Nomi did well. He had his moments of course, but I was honestly surprised at how well he did. He soldiered through the day.
The first part of the day had us meeting with Dr. McGuire, Kathleen, and Dominique. We had to go over the informed consent in detail. It's is an important step during a trial. It's our chance to really ask questions before we get started. We can always ask questions at any time, but it's important to really understand everything before they begin.
Once it was done, it was off to the mobility testing with Dr. Dan, Dominique, and Sarah. This is essentially a large obstacle course. They start off by keeping Nomi in a dark room, with his eyes covered to get them acclimated to the dark. They then have him walk the obstacle course in three sets, both eyes, left eye, and right eye. Each set is done at a varying level of light, starting very low and slowly working it's way up. They have to change the obstacle course each time so that Nomi can't memorize it. It was really neat for us to see. You really got a sense of how much light he needed and the difference in his vision between both eyes.
There were other tests throughout the day, using many fancy, expensive machines, whose names I have already forgotten. Some required a lot more cooperation from Nomi than others, and as any parent can attest, at age 5, sometimes cooperation and attention are hard to come by.
The worse parts of the day were mainly the eye drops to dilate his pupils, the blood draws, and believe it or not, the informed consent. I thought he was intensely focused on his iPad... But he was also listening, and every time we mentioned something he got a little scared, and after Dr. McGuire left, he had an epic meltdown and hid under the table.
The little extortionist was able to get quite a huge sum of bribes out of Mom and Dad to get out from under there... I think I've promised him almost $250 worth of stuff and I had to let him drink All the coke he wanted today. I think he has a future in business.
For me, personally, lunch was the toughest part of the day. We ate at the cafeteria, and as I looked around the room, it really hit me how blessed we are.
We are blessed, because we have this phenomenal opportunity. But as I looked around , and saw so many ill children, from all over the world, I felt even more blessed. Even though his vision is severely impaired, he is still a healthy, happy little boy. The families there were going through things even harder then we were.
After a 12 hour day, we are exhausted, mentally and physically. We are glad to have completed this step. God willing, these tests will reveal what needs to be so that he makes it. In 14 or or more days, the data will be compiled, and they will let us know.
We have a few more tests tomorrow, and then we head home.
I'll be posting some of the many pictures I took of the various procedures. In some cases, I was not able to or not permitted to take photos. But I will post what I can.
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