Well, It's Not Good

I wish I could write this today to say we have some good news to share, but I can't.  I'm going to make this short for two reasons, first, I'm mentally exhausted and second, my laptop got water spilled on it last night and it's a brick now so writing a long blog post just isn't happening tonight.

Dr. Trese was very nice, taking lots of time to explain things to us.  I have copious notes on how my daughter's eyes are different, how what's happened and is happening to them goes beyond unusual into the ultra rare range and how, ultimately, the hope is to preserve what vision she has left because that's likely all she'll ever have. 

We're staying overnight because Dr. Trese wants to see her in his office tomorrow and observe her visual ability, to determine what she can still see, because thereafe options they have that might help, but they may affect the vision she has now.  

When I get home and get a laptop I'll write out some specifics from today.  It's interesting in a horrifying ocular way and I don't think anything could have been done to predict or stop it even if we'd been in the best spot or had known any more earlier on. 

That being said, we're okay and I need to ask that we be given a chance to cope with this as a family.   We're fine on support, don't need meals brought and above all, have a child who seems fine with everything without any special fuss.  My husband and I just need some time to figure out things on our own. 

Thanks to everyone for their positive thoughts, prayers, supportive comments and love.  We appreciate every one of you and thank you for your understanding. 

The Big Boy Update:  We re waving bye to a friend the other day.  As we drove off my son said, "bye, bye Benjamin. You look smaller than usual."

The Tiny Girl Chronicles:  After the EUA in Detroit today we checked back into our hotel and were given the room right beside the pool. Pool, did you say?  A pool is a sure fire way to make your four-year-old smile so we went to Target and got suits.  She , my husband and I had a fantastic time swimming, playing, singing and playing games in the empty pool and hot tub area.  Tomorrow we're going back before our appointment in the afternoon.