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.
Wow... Texas? In August? You are a brave man. Our A/C is not working right now so our house heats up to 86 degrees every afternoon regardless of where we set the thermostat.
Hope you and the girls enjoy your time stuck in your parents' house! :)
Posted by: Lisa C. | July 22, 2008 at 12:38 AM
I tried to leave a comment on your last blog post, but I think it got eaten just before my Internet went and died on me. (I doubt you missed it, though, 'cause I think that was my first comment here...) ;)
I didn't realize until that post that Kathryn's diagnosis was so recent. I just started reading last month, and I'd had the impression that she's been living with epilepsy for years. My daughter started having seizures about 2 months ago (is only 2 months?!) so I am identifying with the roller coaster ride.
Best of luck to all of you, both for figuring out a way to control Kathryn's seizures, and for surviving Texas in July. :)
Posted by: Fawn | July 22, 2008 at 01:25 AM
Happy Birthday! Helluva gift, eh?
This parenting stuff isn't for the faint of heart. It ain't for teetotallers, either - how do they make it?!
Best to you and all of yours as you wade through these issues together.
Coincidentally, my boy is 8 today. He would have DIED if I'd gone all out and made the crystal skull cake a la The Mom. Fortunately, I don't let him read your blog, so he thought grocery store cupcakes were cool enough. All he really wanted to do today was play Lego Indiana Jones on the Wii until his eyes burned out. Check!
Posted by: Leah | July 22, 2008 at 02:23 AM
Ouch.
Posted by: Zoe | July 22, 2008 at 06:55 AM
Happy late birthday and happy travels. If you can manage the latter you are a better man than I (am a woman).
Posted by: Sybil Vane | July 22, 2008 at 07:34 AM
Texas?! My friend landed there last week to take her girls to Camp Kickapoo. There, in 101 degree heat they will learn (among other useful things) how to shoot. Target practice is on pink army guys set up on a fence. They might even have competitions involving putting on lip gloss while killing a scorpion. Across the way at the boys camp (Camp Kickmyass?) they learn to shoot from a moving truck. Watch out for stray bullets, my friend. And be safe.
Posted by: Trish | July 22, 2008 at 07:34 AM
Yeh, here in Dallas it's ridiculously hot. You know that old cliché of frying an egg on the sidewalk? It's not a cliché anymore. Days and days of 100+ temps? Most of us try to leave here during the summer! Best of luck with your visit, and we're praying for all of you!
j
Posted by: Jim | July 22, 2008 at 07:44 AM
You're showing signs of your old age when you are crazy enough to go to Texas in August and getting there requires a plane ride with that many girls. Just sayin'.
Posted by: Burgh Baby | July 22, 2008 at 09:00 AM
Austin? Austin? Austin? Let me plan a meet-up! (and happy belated birthday party)
Posted by: Jennifer | July 22, 2008 at 10:27 AM
My husband and I live in Cleveland, Ohio now, but I'm originally from Houston. Apparently my husband is slightly insane because he mentioned flying down to Houston this coming weekend to visit my parents. I hope he has fun without me--there's no way he can get me back there during the summer! Happy belated birthday!
Posted by: Kate | July 22, 2008 at 10:35 AM
As long as you guys focus on all those other paintings, I think you will figure this out soon enough and you'll look back at this time as a short but scary period of uncertainty.
As for you, I think you might look into a brain scan for yourself, to see what is causing you to undertake such a trip at this time of year.
Posted by: LiteralDan | July 22, 2008 at 10:36 AM
Jennifer: I was planning a brief trip down to Austin. How exactly does a meet-up work? Does it involve throngs of people, some swooning, and more than a few pairs of panties thrown at my person? Because if so, I'm in!
Posted by: Brian | July 22, 2008 at 10:51 AM
Unfortunately I think our family is getting ready to belly up to that same buffet (keeping with the present metaphor). Texas. Hmmm. I think the senility of old age has begun to kick in.
Posted by: Bennie | July 22, 2008 at 11:29 AM
Sorry to hear Kathryn is still having so many seizures - hopefully the new drugs will help. Belated happy birthday, and have a great trip to Texas (let's face it, could it possibly be any hotter than it's been here in N.J. this past week???).
Posted by: Mauigirl52 | July 22, 2008 at 01:33 PM
Delurking just to say that I'm keeping you all in my thoughts.
Posted by: Beth | July 22, 2008 at 05:03 PM
You're coming to our part of the world! Bring shorts. It's 100 degrees here lately!
Posted by: Sandi | July 22, 2008 at 07:31 PM
Remember Brian's mom and dad, the ones who stayed with the girls while The Dad and The Mom rekindled on the beach? There's hope for The Dad now that his mom is there to help and besides, what do you think we live outdoors in the summer! The Dad, make the best of this opportunity and take care of yourself.
Posted by: Cowtown Girl | July 22, 2008 at 07:45 PM
Gracious, if Kathryn is on this kind of form whilst battling her epilepsy, what will she be like when it's under control? It's likely to be somewhat amazing.
Texas sounds ...hot. We occasionally have hot over here in England but normally manage to cope by removing our cardigans and staying indoors until it starts to rain again.
Have a good time and if all else fails, buy more Webkinz.
Posted by: Mort's Mom | July 22, 2008 at 07:47 PM
Medicine is a practice not a perfect. You hear about people - every day - beating the odds; defying science. Kathryn is one of these special patients. The stuff of medical journals.
Hopefully she will just enjoy vacation and not think of all this for a while...
Posted by: swirl girl | July 22, 2008 at 08:29 PM
Brian--Have a great time in Texas. For all of you skeptical commenters, Texas has airconditioning - everywhere! My poor sisters were sadly disppointed when they visited me up north and learned that A/C didn't come with the cheap student apartments. My neighbors (when I was a teenager) in Houston went to Camp Kickapoo, so I was regaled with tales of each tribe's exploits.
Please eat some Blue Bell Homemade vanilla for me, or make Kathryn eat it.
My thoughts are with you!
Posted by: Bluebell | July 22, 2008 at 09:00 PM
"Living with her is like touring the world's museums, with every 14th painting replaced by a fist in the gut."
Very vivid, indeed. I love you when you're metaphory.
Posted by: Robyn | July 22, 2008 at 09:32 PM
But I want to go to Texas and I want to sing with Victoria... Puhleeeeze, I'll bring my kazoo!?
Posted by: embee | July 22, 2008 at 09:53 PM
greetings from Weslaco, TX! We came down early to a wedding to go to South Padre Island...where Level 2 Hurricane Dolly is now making landfall.
It's fun here with all the other displaced families and FEMA emergency response teams.
Hopefully, you're going to be a little further north!
Posted by: anita | July 23, 2008 at 11:09 AM
Heh heh heh. I flew to California with my 18 month old and my father. We had pre-arranged the seats, but once we arrived they had (of course) changed them so we'd all sit apart. Strangely enough, no one had a problem with changing their seats to let my father and me sit on either side of the howling demon that used to resemble my daughter. (Once the sippy cup and toys came out, she was adorable and sweet for the rest of the trip.)
Posted by: Jess | July 23, 2008 at 11:53 AM
My thoughts are with your family as you grapple with the epilepsy.
And then, ss if you didn't have enough to worry about, there is Texas. I'm sure you'll all look great in cowboy hats. Post pictures of that upon your return.
Posted by: Vikki | July 23, 2008 at 09:00 PM