Hopefully Optimistic

Hello all! We are all settled into our hotel in Philly. We had a nice day, spending time with family. Nomi had a good time playing with his cousins Saira, Aalia, and Rayaan. It was a nice distraction for him, a chance to let loose.

He knows why we are here, and obviously he is nervous. He hates going to the doctor. 

This makes Beenish and I nervous, we are hoping he makes it through the next two days, Inshallah. 

I spoke to Dr. Emile Sharifi today. I have known Emile since I was 12. He has been walking me through much of this for the past few years. He ran down the list of the many tests they will be performing on Nomi. He assured me none are invasive, except for the blood draws. A few of them may be difficult for kids, but we are at CHOP, which he says is the best children's hospital in the US, and arguably in the world. They have probably figured out a way to address it , after all, this is the same hospital that was able to treat a terminal leukemia patient with a modified HIV virus - but that is an entirely different blog. :)

Dr. Sharifi, who is an opthomologist, had also agreed to contribute to this blog. He is busy flying around the world, working for peanuts, in order to help those less fortunate, but has agreed to take time out of his schedule to help educate, inform, and explain to those who may be reading this.

I'm going to run down the list of the many tests they will be performing tomorrow and Tuesday. Hopefully he will be able to explain in more detail... I am no scholar in the ways of opthomology, I'm just a pill counter typing on an iPad. 

Aside from a normal medical exam, history, and lab work... There will be many other steps.

To start, there will be a sit down with the researchers to go over the informed consent process. This is essentially the legality of the whole study. Since this is an experimental procedure, they must go thought the pros, cons, liability, etc before we can even proceed with a screening. This document is 26 fun pages of light reading... If anyone is having trouble sleeping I would be happy to forward you a copy... It should help. :) All kidding aside, it is an important step.

The rest of the exams are : dark adapt test, mobility testing, visual acuity testing, Goldman visual field exam, Humphrey visual field exam, dilation with slit lamp/IOP exam and fundus exam, optical coherence tomography (two types stratus and Heidelberg Spectralis) and fundus photography. 

I went to both webmd and Wikipedia, but honestly, it would take me a long time to explain it that way... Most of these are standard opthomological exams used to check for different things, some are specific to LCA. 

With big words and names such as those, I am sure these are all very important things to look for. Again, a big thanks to Emile for explaining them to me much better than the Internet ever can. 

Just to note, having a son with a retinal disease can be daunting... But it's a great relief having friends who are physicians who specialize in opthomology, to talk us through it all. I've asked them all to contribute if they can. They have taught us a lot..  Since we have launched this blog, we have had over 1000 hits. This tells me there are people out there who are really trying to learn more about LCA. With  our experience, through this blog, along with some medical expertise, we can help other families with children who have LCA.

Wish us luck tomorrow guys, keep us in your prayers.  Good night from the city of brotherly love.