Sufficient time has passed since the surgery so we saw the doc on Monday to turn on my daughter's VNS. I once again explained what it would do to her. I don't think she's ever really understood what we were doing or why. She just grudgingly went along. Naturally, she'd rather we'd all just leave her alone but she also wishes she didn't have to deal with her seizures. For all her trepidation, she's been a trooper.
So the doc brings out this laptop computer with a device attached by a cable. I didn't note what kind of computer it was but I did notice a DOS command prompt when he exited the program. I'm thinking this was a 486 that was still chugging along running proprietary software. Anyway, he has my daughter hold the device, a metal box about 3"x4"x7" with a single LED indicator light, up to her chest. He changes a few settings on the computer screen (frequency and strength of the charge) and less than ten minutes after arriving we're done.
After a few minutes, she receives her first pulse. It's weird for her, of course. Then again five minutes later (and so on forever more) she gets another one. She describes it as a kind of vibration feeling which is to be expected. A small electric current is sent up the vagal nerve which runs up the side of the throat for 30 seconds every 5 minutes. She can also activate it herself with one of the supplied magnets which would send a stronger charge for when she feels a seizure coming on. Although not uncommon, we did not note any drastic change to her voice. It should also be noted that it is set at the lowest and most infrequent setting so she can get used to it. No doubt the doc will be upping the charge a bit in a month or two.
Interestingly, today she was asking for her magnets so that she could activate it herself. Not only does this show she's getting used to it but also is ready to take some action herself to control her seizures. We'll have to explain to her that this device may not show real effectiveness for a few weeks or perhaps even months. On the other hand, some patients have noted some improvement almost immediately. Personally, I think just having the option that there's something she can do when a seizure approaches would give her some sense of control. As long as she can derive some benefit from that, the added sense of control could give her a much needed confidence in dealing with the world in general.
Hardly a cure-all but a step, a small but significant step in the right direction. Sure she has a long ways to go but I'll take my victories wherever I can find them and build on from there.
Tuesday, December 28, 2004
Monday, December 27, 2004
Holiday re-cap
I foolishly stepped up to "direct" the "sacred drama" at our church which was performed in lieu of the liturgical readings on Christmas Eve. I had eight kids who wanted to narrate on a script that only called for three. With my theater background I figured I could work them all in and that the different voices would add more texture to the experience.
However, it seems I crossed some sort of Catholic liturgical line. I was told that because it was part of the Mass only three narrators could be allowed. Huh? So at the second rehearsal (out of 3 total) I put the kids' names into a hat and pulled out the three. Fortunately none of the three girls who never showed that night were picked. Two kids were disappointed and I looked like a heel once again. I had already severely let down a couple of little girls who had their heart set on being Mary. I had anticipated that one. But it was probably made worse because I picked my daughter who, I swear, was by far the best one for the role (based on her peformance AND her height relative to the actors playing angels and Joseph).
Unfortunately, at the time of the actual performance I missed most of it as I was corraling and educating all the last minute "ancilliary" shepherds and angels--about two dozen kids who, as they were told to, just showed up that evening at Mass and put on a make-shift costume and who had little to no idea what they were supposed to do. Still, from what I saw and from what I heard, it seemed to come off well.
I wish my singing solo earlier did as well. It was before Mass as people were coming in and taking their seats. I was to sing this solo written from Joseph's perspective. However, with all the commotion and the placement of the mikes relative to the piano, I could not hear the piano and could not pick out my starting note. We had to stop and start again. How embarrassing. But once I got going on it, it went quite well. But, boy, we could sure use some monitors back there.
Please, God, let this be the last year of Santa!
My youngest daughter insists on sleeping on the couch by the fireplace on Christmas Eve. My middle one, who due to her disabilities has maintained her Kringlistic beliefs, just would not fall asleep. Finally I was sneakily schlepping stocking stuffers past her open bedroom door at three o'clock in the f-ing morning! Then I had to load up the stockings and sneak them back to hang them, ever so quietly, about two yards from my sleeping young 'un. After that, I got to drag out the biggies from the Jolly Ol' Elf: a PS2 for the littlest one, a nifty telescope for Miss Middle girl, and a TV/DVD/VHS combo for the oldest. They were all well-received in the morning, or so I imagine as this was the first year where the missus and I were not up before the kids.
I bought Mrs. Koko several smallish items (a Christmas pin, a cologne sampler collection, a Wizard of Oz DVD, etc.) but her biggie was a nice leather coat that she was in no way expecting. She was way impressed and pleased. I received Metal of Honor: Rising Sun for the GameCube (and was up until 1am last night playing it), the Star Wars trilogy in DVD (what a cool bonus disk!), and a way, way, way cool black pork pie hat.
Man, I LOVE this hat. I've been wanting a pork pie for over a decade but could never justify spending that kind of money on something so trivial for myself. I'm not a "sexy, gorgeous" guy type but this baby brings out my "charming and cute" qualities. Then from my ma-in-law I got a healthy gift cert from the local music store which I'll be putting toward an acoustic guitar amp. And my big bro bought me a couple of guitar lessons at Sacramento's premiere guitar store. Too cool.
On a downer note, my godmother was in a minor traffic accident and suffered six broken ribs. That meant that her planned open house on Sunday was cancelled and I'm without my Christmas tamales this year.
However, it seems I crossed some sort of Catholic liturgical line. I was told that because it was part of the Mass only three narrators could be allowed. Huh? So at the second rehearsal (out of 3 total) I put the kids' names into a hat and pulled out the three. Fortunately none of the three girls who never showed that night were picked. Two kids were disappointed and I looked like a heel once again. I had already severely let down a couple of little girls who had their heart set on being Mary. I had anticipated that one. But it was probably made worse because I picked my daughter who, I swear, was by far the best one for the role (based on her peformance AND her height relative to the actors playing angels and Joseph).
Unfortunately, at the time of the actual performance I missed most of it as I was corraling and educating all the last minute "ancilliary" shepherds and angels--about two dozen kids who, as they were told to, just showed up that evening at Mass and put on a make-shift costume and who had little to no idea what they were supposed to do. Still, from what I saw and from what I heard, it seemed to come off well.
I wish my singing solo earlier did as well. It was before Mass as people were coming in and taking their seats. I was to sing this solo written from Joseph's perspective. However, with all the commotion and the placement of the mikes relative to the piano, I could not hear the piano and could not pick out my starting note. We had to stop and start again. How embarrassing. But once I got going on it, it went quite well. But, boy, we could sure use some monitors back there.
Please, God, let this be the last year of Santa!
My youngest daughter insists on sleeping on the couch by the fireplace on Christmas Eve. My middle one, who due to her disabilities has maintained her Kringlistic beliefs, just would not fall asleep. Finally I was sneakily schlepping stocking stuffers past her open bedroom door at three o'clock in the f-ing morning! Then I had to load up the stockings and sneak them back to hang them, ever so quietly, about two yards from my sleeping young 'un. After that, I got to drag out the biggies from the Jolly Ol' Elf: a PS2 for the littlest one, a nifty telescope for Miss Middle girl, and a TV/DVD/VHS combo for the oldest. They were all well-received in the morning, or so I imagine as this was the first year where the missus and I were not up before the kids.
I bought Mrs. Koko several smallish items (a Christmas pin, a cologne sampler collection, a Wizard of Oz DVD, etc.) but her biggie was a nice leather coat that she was in no way expecting. She was way impressed and pleased. I received Metal of Honor: Rising Sun for the GameCube (and was up until 1am last night playing it), the Star Wars trilogy in DVD (what a cool bonus disk!), and a way, way, way cool black pork pie hat.
Man, I LOVE this hat. I've been wanting a pork pie for over a decade but could never justify spending that kind of money on something so trivial for myself. I'm not a "sexy, gorgeous" guy type but this baby brings out my "charming and cute" qualities. Then from my ma-in-law I got a healthy gift cert from the local music store which I'll be putting toward an acoustic guitar amp. And my big bro bought me a couple of guitar lessons at Sacramento's premiere guitar store. Too cool.
On a downer note, my godmother was in a minor traffic accident and suffered six broken ribs. That meant that her planned open house on Sunday was cancelled and I'm without my Christmas tamales this year.
Thursday, December 16, 2004
VNS implanted
Well, the middle child got her Vagal Nerve Stimulator implanted. Her surgery was scheduled for 9am on Friday and she was home by 1pm that same day. The doc says she lost about one cc of blood which is indicative of a very successful procedure. We finally took the bandages off today and got to see the scars. They're still a bit red and puffy but she has a lot more mobility already. We won't get the device turned on until a couple of days after Christmas. The medicos want to be sure she is completely healed before we add the next variable.
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The above was composed on the date listed but not posted until nearly a week later. I was trying to find a way of posting some digital pix we took during the process and once she came home but never did.
++++++++++++++++++++++++++++++++++++++++++++++++++++++
The above was composed on the date listed but not posted until nearly a week later. I was trying to find a way of posting some digital pix we took during the process and once she came home but never did.
Monday, December 06, 2004
Tree Day
As much as I long for a Rockwellian joys in our family life, the truth is we have very few traditions established. However, over the last few years it seems a trip out to Davis Ranch in Sloughhouse is an event even our teenage "Daughter of Constant Complaint" gets excited about. Sure there are plenty of churches and Boy Scout troops hawking Christmas trees at nearly every intersection and parking lot in town but Sloughhouse, though out in the country, is actually closer than my work. And all the trees are the same price ($28) no matter how big.
Usually, I push for getting the ol' tannenbaum the Saturday immediately following Thanksgiving (I have decreed in full fatherly mode that Christmas season officially begins when Santa parks his fat, red hiney in front of Macy's on 5th Avenue in NYC at the end of the parade.) However, a whole slew of life-crap has just devoured our time and the house was not properly prepped for a tree that weekend. So it was marked on the calender for the following one: December 4 - get the tree; Dec 5 - decorate it.
But then, on the Sunday of Thanksgiving weekend, the day before all the kids go back to school, Mrs. Koko wrenches her back. She is out of commission completely for the next 3-4 days. The first few days of that week had at least two of my three daughters ill with one thing or another. The house which had settled into a mild chaos as I focused on clearing out the garage and gathering the Christmas trimmings, fell further into disarray while I was at work. We barely clear enough space to maneuver in a tree by that Saturday and luckily, after a couple of nights of Flexeril, Mrs. Koko's back is behaving a little better (though not soon enough for her to make it to a yearly cookie exchange--no holiday treats in the Koko house yet).
Saturday comes and there's a slight (but planned) delay whilst the older two daughters get their hair trimmed and colored. And then, we're off! The usual sibling arguments once there and the inevitable disagreement over which tree is the "perfect" tree. Mom like Tree A (which really was the better tree) but the youngest one (9 yrs old) is on the brink of tears if we don't get Tree B. Her sisters side with her...eh, it's almost as nice as Tree A and, frankly, we were losing daylight and it was getting cold. We go with Tree B. I give my girls a few tries with the saw but eventually it's up to Dad to fell the poor plant. Then, while I lash our quarry to the roof of the minivan, the rest of them go on a second hunt for a tree for grandma. Soon we have two trees strapped to the van and, after a brief stop for some kettle corn, we're off to the Sloughhouse Inn--our traditional stop on all our tree safaris--just a half mile up the road. The missus and I each have a prime rib sandwich while the girls dine on burgers and a calamari appetizer. As it supposedly can earn the Daughter of Constant Complaint some extra points at school, we ask to see the manager so she can interview him about the many and various ghost stories associated with the Inn. He was cool about it and had a decent story to tell himself even though he'd only been there a few weeks.
We drop off grandma's tree and set it up for her. It's a bit taller than she usually gets but it looks great. Then we get ours home. I have a bit of trouble getting the stand to fit over the trunk and have to saw off a bit of the knots on the side before I can get it in. Finally I got it in the stand and drug the tree into the house to our traditional tree-spot, in our front bay window. Only...it doesn't fit. The tree is about a foot too tall. The ceiling slants upward from the window so we bring it further into the room. But it's not clear of the ceiling until it is practically in the very center of the room, right in front of the TV. OK...on to Plan B. Some quick furniture rearrangement and we get the tree positioned under the peak of the vaulted ceiling.
This is easily the largest tree I've ever had in my house in my entire life. And the girls just love it.
Now if I can only pull off my hoped-for surprise this year...ages 9, 14, and 15 and they've never been to the snow. One thing or another always seemed to get in the way. I'm looking now for a vacation rental for the weekend following New Years (they're all booked up until then) up in/near Tahoe. Keep your fingers crossed.
Usually, I push for getting the ol' tannenbaum the Saturday immediately following Thanksgiving (I have decreed in full fatherly mode that Christmas season officially begins when Santa parks his fat, red hiney in front of Macy's on 5th Avenue in NYC at the end of the parade.) However, a whole slew of life-crap has just devoured our time and the house was not properly prepped for a tree that weekend. So it was marked on the calender for the following one: December 4 - get the tree; Dec 5 - decorate it.
But then, on the Sunday of Thanksgiving weekend, the day before all the kids go back to school, Mrs. Koko wrenches her back. She is out of commission completely for the next 3-4 days. The first few days of that week had at least two of my three daughters ill with one thing or another. The house which had settled into a mild chaos as I focused on clearing out the garage and gathering the Christmas trimmings, fell further into disarray while I was at work. We barely clear enough space to maneuver in a tree by that Saturday and luckily, after a couple of nights of Flexeril, Mrs. Koko's back is behaving a little better (though not soon enough for her to make it to a yearly cookie exchange--no holiday treats in the Koko house yet).
Saturday comes and there's a slight (but planned) delay whilst the older two daughters get their hair trimmed and colored. And then, we're off! The usual sibling arguments once there and the inevitable disagreement over which tree is the "perfect" tree. Mom like Tree A (which really was the better tree) but the youngest one (9 yrs old) is on the brink of tears if we don't get Tree B. Her sisters side with her...eh, it's almost as nice as Tree A and, frankly, we were losing daylight and it was getting cold. We go with Tree B. I give my girls a few tries with the saw but eventually it's up to Dad to fell the poor plant. Then, while I lash our quarry to the roof of the minivan, the rest of them go on a second hunt for a tree for grandma. Soon we have two trees strapped to the van and, after a brief stop for some kettle corn, we're off to the Sloughhouse Inn--our traditional stop on all our tree safaris--just a half mile up the road. The missus and I each have a prime rib sandwich while the girls dine on burgers and a calamari appetizer. As it supposedly can earn the Daughter of Constant Complaint some extra points at school, we ask to see the manager so she can interview him about the many and various ghost stories associated with the Inn. He was cool about it and had a decent story to tell himself even though he'd only been there a few weeks.
We drop off grandma's tree and set it up for her. It's a bit taller than she usually gets but it looks great. Then we get ours home. I have a bit of trouble getting the stand to fit over the trunk and have to saw off a bit of the knots on the side before I can get it in. Finally I got it in the stand and drug the tree into the house to our traditional tree-spot, in our front bay window. Only...it doesn't fit. The tree is about a foot too tall. The ceiling slants upward from the window so we bring it further into the room. But it's not clear of the ceiling until it is practically in the very center of the room, right in front of the TV. OK...on to Plan B. Some quick furniture rearrangement and we get the tree positioned under the peak of the vaulted ceiling.
This is easily the largest tree I've ever had in my house in my entire life. And the girls just love it.
Now if I can only pull off my hoped-for surprise this year...ages 9, 14, and 15 and they've never been to the snow. One thing or another always seemed to get in the way. I'm looking now for a vacation rental for the weekend following New Years (they're all booked up until then) up in/near Tahoe. Keep your fingers crossed.
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