Home Again

The moment we got home yesterday, Firecracker was knocking on our neighbor's door, eager to see her playmates. Except for the head full of staples, you would never know doctors had been messing around in her brain. She should be able to go back to school this week, with instructions to keep other kids from touching the incisions. The hospital gave us a set of staple removers, which we are to take with us to the follow up appointment. They look rather scary, and given how many staples I see, I'm a bit nervous about that appointment.

Bah

I've started this stupid post half a dozen times now. There's no flow.

Firecracker's surger is set for February 8 and that just sucks. February 9 is her birthday. How am I going to explain surgery to her? How am I going to handle watching her handle it? Sometimes I just want to kick God's shins.

Report on the Conference

This past weekend we attended a regional conference on Tuberous Sclerosis. I have information overload. They did drawings for one-on-one meetings with various specialists, and we were able to snag meetings with Firecracker's surgeon-to-be and a geneticist. The genetics are too complicated to think about. Abby's genetics test came back negative for known mutations on the TS genes, but it seems that you can have the mutation in particular tissues (as opposed to the blood they test) and nowhere else, or there may be mutations they don't know about yet. So her labwork is going off to some research center to be mulled over.

They fed us well at the conference. That's more important than people think. We met many nice people, very few of whom had a child diagnosed so late. Some had children with severe autism and developmental disabilities. I met one person who found out she and her sister had it after their children were diagnosed. Dear Husband joked that he was going to Home Depot to buy a blacklight (to look for the characteristic depigmented spots on the skin). We're all very fair, so it's hard to see if we have hypopigmentation.

That's all for now. I'm tired and very sad about it all. DramaQueen is feeling insecure because Firecracker gets so much attention. I feel too tired to be nice to anyone. Someone at work ticked me off royally and I thought how annoying it is that people think I should give a damn.

On a postive note, the director once again passed along some PASTE cds, and he's promised to hand on a Sufjen Stevens CD. Finally I can find out what all the fuss is about.

Adventures in Brain Surgery

Today we met with the head of the epilepsy center at Scottish Rite to hear in person what he had already told us by phone—that he recommends that Firecracker have brain surgery to remove one of the tubers that seems to be the source of much of the seizure activity. He thinks the data show that she will greatly benefit from its removal.

I still can’t get my head around it. Here is a doctor talking in the most matter-of-fact (though friendly) way about opening up my kid’s head and taking something out. Actually, opening up her head TWICE. First to insert a sheet of electrodes to map the problem section and then to do the actual surgery. Poor Firecracker will be stuck in bed with wires coming out of her skull. For a week.

To top everything off, I nicked someone’s bumper in the parking lot. I’m beginning to wonder if I have my own personal demon rushing before me to prepare catastrophes and mishaps.

Well at least I have the season premier of Boston Legal to look forward to.