Vision Loss?

Lily has had many vision tests since birth, and she has never had the eye tumors associated with tuberous sclerosis. It's also difficult to check her vision based on her developmental stage, but it is starting to seem as though Lily has some vision problems. I'm not sure if they seem worse or if her recent developmental advancements have made them more apparent. We have noticed that she's not looking at objects far away and while eating in her high chair, she is searching for the food with her hand and not looking at it. We know she can see some, but neuro seems to think that something is not quite right. We've been through so much since sweet Lily was born and have found some modicum of acceptance, but this scares the crap out of me. Teaching her with the limitations she already has is extremely challenging, but if she loses her eyesight, our Mt. Everest is tripled. Because my husband is legally blind (due to an accident), we know the difficulties that come with limited sight, but he manages with a high IQ...for Lily this would be devastating. We already have an appointment at Seattle Children's because we wanted to have her nystagmus examined by a specialist. We've been waiting on this appointment for about 6 months, so we'll have to wait until December 4th to find out where we are.  Could it be a peripheral loss from the Sabril that she took to stop infantile spasms?--yes, but it would be rare based on how long she took it--there would be no treatment for this . Could it be that her epileptogenic tumor is in the occipital lobe and it has damaged her vision?--Yes, there is also no treatment for this...possibly brain surgery but the risks would most likely outweigh the benefits.  Could it be that TSC has produced tumors in her eyes in the last year? Yes, and those could possibly be removed, but it's possible that the Afinitor would shrink them, plus vision loss from tumors is not all that common. Could it be that she just needs glasses? Yes, but we also know that she has other vision issues...eye control, twitching etc. I hope she just needs glasses, and that I look back at this rant and laugh that what makes me go mad is just a magnificent great love for my daughter.