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.
Thursday, September 27, 2007
Tuesday, September 18, 2007
Nothing that Exciting to Report
I'm so thankful to everyone who has left messages. You guys are great.
I wish I had something coherent to say. Abby's teacher has reported that Abby seems to be having some absence seizures in the morning. She's now at the maximum dosage of Lamictal. Dear Husband has tried many times to get hold of the neurologist in charge of her case at the epilepsy clinic, and they have made the very bad mistake of not returning calls promptly. Never do that, because Dear Husband will tear you a new one. I wish I had some of his assertiveness. Anyway, he did finally find out that the team was discussing her case today. Not that we will know anything for some time still.
Thankfully, Firecracker is doing well at school. She reports to me every day the status of her tumultuous relationship with a boy named Eric. He alternates between being her friend and being not her friend. She also reports on the "mean girls," who have not yet been identified by her teacher (the classes mingle during recess).
DramaQueen and the girl next door made a cafe, complete with food, menus, trays, servingware and cutlery, all made from paper. She also has a fascination with lists. I've seen her happily occupied copying out names from the school year book, organized by grade. I have no idea why this delights her, but I've seen her bore her friends to death with it.
We're looking into buying a house. At the moment we are targeting a particular house that could just possibly be within our means and still keep us in our current school district. Most of the houses here start at 200k, so if this one doesn't work out, we will have to look into switching districts. Oddly enough, the really good school districts are in very expensive neighborhoods. Imagine.
Today we had the company picnic, with each agency representing a different era. We were the 70s. I went as Annie Hall, which I found much preferable to bell bottoms and disco clothing. We won a garish trophy (looked like someone's old golf trophy made over with hot glue and a lot of buttons, sequins and fringe, among other shiny objects).
Another high point--the coordinator gave me 5 or 6 sampler CDs from Paste Magazine. I benefit from his efforts to understand his son. Said son will be performing at The Earl on Halloween, and if I didn't have to do the trick or treat thing, it would be worth it to see our coordinator at a rock concert. But the CDs are lots of fun.
I wish I had something coherent to say. Abby's teacher has reported that Abby seems to be having some absence seizures in the morning. She's now at the maximum dosage of Lamictal. Dear Husband has tried many times to get hold of the neurologist in charge of her case at the epilepsy clinic, and they have made the very bad mistake of not returning calls promptly. Never do that, because Dear Husband will tear you a new one. I wish I had some of his assertiveness. Anyway, he did finally find out that the team was discussing her case today. Not that we will know anything for some time still.
Thankfully, Firecracker is doing well at school. She reports to me every day the status of her tumultuous relationship with a boy named Eric. He alternates between being her friend and being not her friend. She also reports on the "mean girls," who have not yet been identified by her teacher (the classes mingle during recess).
DramaQueen and the girl next door made a cafe, complete with food, menus, trays, servingware and cutlery, all made from paper. She also has a fascination with lists. I've seen her happily occupied copying out names from the school year book, organized by grade. I have no idea why this delights her, but I've seen her bore her friends to death with it.
We're looking into buying a house. At the moment we are targeting a particular house that could just possibly be within our means and still keep us in our current school district. Most of the houses here start at 200k, so if this one doesn't work out, we will have to look into switching districts. Oddly enough, the really good school districts are in very expensive neighborhoods. Imagine.
Today we had the company picnic, with each agency representing a different era. We were the 70s. I went as Annie Hall, which I found much preferable to bell bottoms and disco clothing. We won a garish trophy (looked like someone's old golf trophy made over with hot glue and a lot of buttons, sequins and fringe, among other shiny objects).
Another high point--the coordinator gave me 5 or 6 sampler CDs from Paste Magazine. I benefit from his efforts to understand his son. Said son will be performing at The Earl on Halloween, and if I didn't have to do the trick or treat thing, it would be worth it to see our coordinator at a rock concert. But the CDs are lots of fun.
Wednesday, September 05, 2007
Perkier in Some Respects
On Friday last I had the second surgery in the reconstruction process. This was outpatient, so they booted me out the door before my head had stopped wobbling from the anesthetic. I don’t remember much about the rest of the day. I am now rather itchy, and I have to wear this very attractive heavy-duty surgical bra that practically goes up to my neck. This procedure was a walk in the park compared to the last one and I can see that by the time all is done I will look pretty decent. In fact, since they had to modify the left breast a bit to achieve a match, I’ve had a lift gratis. I can stave off the aging droop a bit longer.
Now that I’m through this hurdle, the full realization of Firecracker’s condition is creeping upon me. The very idea of brain surgery makes me feel queasy. And how on earth do we explain this to her without scaring her half to death? Particularly when I myself am pretty scared?
I’ve been wondering why I don’t feel much like shaking my fist at God, and I conclude that my idea of God is so flat and remote that it would be like shouting at a cardboard cutout or talking to a psychoanalyst:
Me: My kid has weird things growing in her brain and who knows where else and this is just one but probably the worst in a long list of catastrophes we’ve had to deal with in the last 8 years.
God: That’s very interesting. How do you feel about that?
Not exactly Abba, huh?
I’m also feeling terribly restless. Reading is how I usually soothe myself—it gives my mind somewhere to go. But I can’t stop in the middle of the work day and open a book. All my work is in aid of church planting. Does North America really need more churches? What should I be doing instead? Don’t know. Have never known. What do I want to do? Stay at home. I think. Maybe.
Now that I’m through this hurdle, the full realization of Firecracker’s condition is creeping upon me. The very idea of brain surgery makes me feel queasy. And how on earth do we explain this to her without scaring her half to death? Particularly when I myself am pretty scared?
I’ve been wondering why I don’t feel much like shaking my fist at God, and I conclude that my idea of God is so flat and remote that it would be like shouting at a cardboard cutout or talking to a psychoanalyst:
Me: My kid has weird things growing in her brain and who knows where else and this is just one but probably the worst in a long list of catastrophes we’ve had to deal with in the last 8 years.
God: That’s very interesting. How do you feel about that?
Not exactly Abba, huh?
I’m also feeling terribly restless. Reading is how I usually soothe myself—it gives my mind somewhere to go. But I can’t stop in the middle of the work day and open a book. All my work is in aid of church planting. Does North America really need more churches? What should I be doing instead? Don’t know. Have never known. What do I want to do? Stay at home. I think. Maybe.
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