Dad, Reese, and I went to the opthalmologist this morning. Reese had her eyes checked. She pointed to letters on a card because she wouldn't talk to the nurse. She got down to the screen with a little '20' in the left bottom corner. With her right eye, she said she couldn't see anything on the screen with '250' in the corner.
They were able to do an in-office pressure check without her screaming. She didn't like it, who would, but she didn't complain, scream, cry, or fight. She had a pressure of 20 in the right eye and 19 in the left, both of which are in the normal range. So for now, the drops are maintaining the pressure at a normal level. The doctor also told us she has very little vision in her right eye. Basically, the eye is light sensitive. I asked if there was anything we could have to save the vision, if patching really would have done anything. He, more or less, said it was one of those things where it would have either helped a little, or not at all. One of those no harm, no foul things. He said because she was so old when we got her, there was little chance of recovering what she had lost. Patching was kind of a last ditch effort. He told us that eye was basically a liability now. The drops aren't being used so much as to save what's left of her vision, as it is to keep the pressure down because really high pressures can be painful. She is a smidge near-sighted in her left eye, but hey, so is everyone else in our family, LOL, all of us worse than her. He said this was why we had 2 eyes, so if one goes bad, there's still another. She can live a perfectly full life with just the one functioning. She also has nystagmus in her right eye, which is where the eye wobbles, or bounces back and forth, when she tries to focus with it. It's a sign of really poor vision. For now, though, the drops are doing their job. We go back in 6 months. He's decided to put us on twice a year pressure checks instead of every 3 months (4 times a year). Also, he didn't tell us to continue trying to patch.
Now, we just need to get her to wear glasses to protect her good eye as much as help her see. Should be fun.
Mom also got a call from Dr. Buckmiller today. They say that they had an intervention lady look at Reese's MRI from last fall again, and she has no signs of Sturge-Weber. So, in their books, she doesn't have SWS. Mom and I believe she does, it is just Type 2, an incredibly rare variety.
"Type 2: This type involves a facial angioma and the possibility of glaucoma, but no evidence of intracranial disease. There is no specific time-frame for the exhibition of symptoms beyond the initial recognition of the facial PWS. Throughout the life of the individual, interrelated symptoms may manifest in glaucoma, cerebral blood flow abnormalities, headaches, and various other complications. Additional research needs to be conducted on this type of SWS to determine the course of the syndrome over its natural progression." -Taken from the Sturge-Weber Foundation's website, www.sturge-weber.org.
So basically, she may ever develop something beyond her PWS and glaucoma, she may never. It's a toss up. But Type 3 SWS has only the internal signs, no PWS or glaucoma. Type 2 is basically the opposite. External, no internal. But Mom and I are holding to she does have SWS, we just got a really great hand from fate with it.