The neurologist came into Kathryn's hospital room and greeted us all: me, Sharon, Kathryn, Kathryn's webkinz, Kathryn's webkinz, and Kathryn's webkinz. Then she asked Sharon and me if we wanted to talk in the hallway. She had never asked this before, and I wondered why she was doing so now. For one thing, up to this point all of our conversations about her epilepsy had included Kathryn, and for another, Kathryn was busy watching back episodes of Avatar on the hospital TV, so our doctor could have easily stood in the middle of the room and announced she was the High Priestess of Synthar, Lord of the Demon Horde and Kathryn's seizures were actually a natural result of her on-going transition from seven-year-old girl to Demon Hordette and the most she would have gotten from Kathryn would have been a "Shh!" because Sozin's Comet was coming in just two days and Kathryn had some major catching up to do before it arrived. AIRBENDING SLICE!
In the hallway, the neurologist informed us of what Sharon posted here a few days ago: It's still Rolandic Epilepsy. (Somewhere along the way, the doctor stopped calling it "Benign" Rolandic Epilepsy, and I really wish she'd bring that first word back.) But the news our neurologist was most concerned about was the frequency of Kathryn's spikes as shown by the EEG. As Sharon wrote, in the same amount of time that most kids would have between three and four spikes, Kathryn was topping out between thirty and fifty. And that's on medicine. "Frankly," the doctor said, "I'm having a hard time reconciling the EEG results with what I see in your daughter." I pressed her to explain that and she replied, "Well, with so much activity in her brain, I wouldn't expect her to be so alert, so high-functioning."
"Ma'am," I replied, "If you visited our house for just a few hours, you'd be amazed that any of us are so high-functioning."
But it's true. Despite the virtual shower of sparks squirreling around Kathryn's brain at any (and every) given moment, she is still every bit the girl she's always been. I have no doubt if any of you frequent commenters to this site actually came here and met my oldest daughter, you'd turn and clock me across the jaw, cursing me for ever worrying you about her in the first place. But that's how she is. She's wonderful, she's wonderful, she's wonderful, and then she's not. Living with her is like touring the world's museums, with every 14th painting replaced by a fist in the gut.
So now the great medicine quest continues. We're a team of chefs surrounding the pot of Kathryn's brain, trying to find the right combination of herbs to eliminate the acrid aftertaste of an otherwise perfect soup. (Look at me tonight, being all metaphory. Must be the wisdom of my newfound age.) The latest drug cocktail is a hopeful one, but it will take months to affect any change, so we are bracing ourselves here for a wild seizure-ridden ride. And I'm taking you all along with us. Oh, lucky you.
But for now, we are going someplace you can't, or at least shouldn't: Texas. Tomorrow the girls and I fly to Texas to spend a few weeks at my parent's house. We will be joined on the flight by my mother, who was a last minute addition to the plane's passenger list. She's not seated anywhere near my daughters or me, but something tells me there will be no shortage of volunteers eager to switch seats with her. Especially once Victoria starts singing.
Have a safe and hopefully relaxed visit.
My thoughts and blessings with you and your family while nevigating the medical maze. Kathryn certainly is an amazing girl with great parents
Posted by: Catootes | July 24, 2008 at 07:23 AM
Happy Belated Birthday. I hope you were able to take a minute (however short) to celebrate in some small way.
Sounds like you've entered quite the minefield of medical terminology and diagnoses. What a sucky journey for you all to have to be on. I hope the time in Texas provides a wee bit of a break....ugh...you know what I mean.
Glad to see you've retained some of your sense of humour though :)
Posted by: MadWomanMeg | July 24, 2008 at 04:55 PM
There are so many cliches that come to mind, but here's the truth: I have no idea how you and wife can manage such a difficult thing. You are either stronger than most, or I am just a big fat wimp. When my 20 month old has a cold I turn into pudding. I can't imagine what I'd do if she had something so serious. You guys are doing an amazing job!
I am sending you a tight hug and all my love from San Francisco.
Posted by: Florencia | July 24, 2008 at 08:00 PM
Sigh. Months? Can't imagine the anxiety.
Posted by: Amy the Mom | July 25, 2008 at 12:48 AM
"Living with her is like touring the world's museums, with every 14th painting replaced by a fist in the gut."
Oh, Brian. You are such a fine, fine writer. There, I had to simply be directly sweet about it, but damn it it must be said.
Posted by: Polly | July 25, 2008 at 04:52 AM