Elizabeth’s Not-So Merry Go Round
By Deanna | June 25, 2010
And the health care system goes round and round. My 8-year-old daughter Elizabeth and I feel like we’re getting tossed like so much Caesar.
When I was in second grade, our school yard had one of those old-fashioned merry-go-rounds, a metal circle with handle bars. You ran alongside it, and when you hit the perfect speed, you’d jump up and hang on.
Most playgrounds don’t have these anymore. That year, I was idly sitting on it during recess, reading a book. The football team came out to practice on the field adjacent to the playground. They decided I looked like I needed a little fun, so they began spinning the merry-go-round. Naturally, with six athletic teenage boys putting their muscle into it, I spun very fast. My book went flying off the bumpy metal wheel as I hung on to the handle, bracing my feet against the opposite bars in hopes of being able to ride it out.
But I couldn’t. Even though the boys stopped running and backed away, I couldn’t hold tight enough and flew off, landing in the gravel.
It could have been worse. Nothing was broken. I skinned one side of my leg and arm, a mass of blood, dirt, and gravel. The boys were terribly sorry and tried to hand me my book. I got tons of attention I neither needed or wanted. Shortly after, this merry-go-round was removed. I was blamed, and this ushered in a rather unhappy period of that year.
The way our world has spun since Elizabeth had to go on full-time anti-seizure mediation has been just as sickening, and I definitely feel the fear of a terrible crunch at the end. In this week’s whirl, we got our three-month supply of medicine only to open the box and discover the generic instead of the brand name.
Our neurologist had absolutely insisted we not do this particular medicine in generic, as we had done for the first month. The FDA only requires a generic dosage be within 80-125% of the correct amount of the brand. For a tiny girl like Elizabeth, getting 80% of the lowest dosage that she’s already on, since she is so small, means she may get seizures. Which means we’ll think it’s not working even if it might be. And of course, that she might have something happen to her, the always-fear when seizures are present for anyone.
To add to the fun, the suspension that the generic drug sits in as a liquid (she’s too small for any pill dosage) is seriously inferior to the brand name, making it appear like sour milk. We are quite certain that the cloudy liquid and the thick white chunks are not the same dosage, so we had to be super-vigilant about shaking it very very well. And even then, it seems like the bottom of the bottle is not the same color as the top.
We confirmed all this with our pediatrician yesterday. I ran to our local Randall’s, which had filled our interim prescription correctly with the brand name, and they delivered the bad news: since we had three months of generic from the mail order, the insurance wouldn’t cover it. We’d have to pay $186 a month for three months to get the brand name.
Upon calling the neurologist, we learned she had forgotten to uncheck the generic equivalency box. Her mistake, they were sorry. $600 sorry?
In more urgent news, all this delay meant we were OUT of medicine. Tick tock. This is an uncommon drug as a liquid and not stocked in most pharmacies.
Let me tell you, if you are ever in any sort of medical bind, I hope you get a pharmacist assistant like Cecilla at our local Randall’s, who, despite the fact the error was the doctor’s, and despite the fact that a mail order place got us the wrong medicine and it wasn’t anything to do with her, spent hours on the phone, negotiating with the insurance, putting in a medical emergency override, and getting us the rare brand name drug for $25, all within 16 hours.
I know most of us are at the mercy of doctors, insurance companies, and drug policies. But sometimes, people in the system do stand up for you. And sometimes, it’s not even the people you think it will be.
Elizabeth has gone 8 weeks without a seizure. We hope that means the drug, our second one to try, is working. She’s been to Magic Camp, finished her Pokemon game, and kept her nose in Gail Carson Levine books all summer. She just finished second grade. Our merry-go-round has been about as traumatic as that ride I took at her age, and the consequences have been, like mine, minor compared to what they could be. We see parents of children with heartbreaking problems and count our blessings. Certainly right up there on that list is Cecilla, who helped make sure that as the world started spinning out of our control, that we got the care we needed.
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In your compliment sandwich, hold the cheese
By Deanna | June 13, 2010
“You forgot the sandwich.”
The fourth grader stared me down, her nose twitching. I shifted beside her desk, where a laptop displayed her personal-essay-in-progress.
“Was I supposed to bring lunch?” I asked.
She rolled her eyes and thrust her chin into her palm. She might be nine, but she definitely had the teen angst down. “No. The compliment sandwich.”
“Yes, oh, sorry.” As a parent editor, I was supposed to first give a compliment to the student, then make a single constructive suggestion, then finish with one additional compliment.
I scanned the essay. “Um, this part where the coach screams at you–very vivid.”
The eyes rolled again.
The students were all at the point of their essay revision that turned them apathetic. I totally understood their impatience. How many times had I written something quickly, loved it, and wanted to proclaim it done? Oh, so there’s a plot hole or two, and that one character just sort of disappears. And yeah, seventeen pages of backstory exposition is a lot…but it’s good stuff! If we mess with it, we might lose the voice! Disrupt the flow!
I’m also an impatient critique buddy. I know we’re supposed to compliment each other, support each other, keep each other going in the face of near crushing rejection from the industry. But I want to get to the problem, the slow sections, the confusion, the part where I might fail.
Recently I asked (nay, begged) my two writing groups to help me revise Jinnie Wishmaker on an impossible timetable. Thirteen (my lucky number) amazing writers read my book OVERNIGHT and sent me comments the next morning. In a crazy two-day crunch, I fixed most everything they pointed out, things I hadn’t been able to see in two years of writing and revising. And the unbelievable thing — they were all so kind! They were careful not just to point out the weaknesses, but also the parts I shouldn’t mess with.
At no point in the process did I want to just give up. Snuggled within the compliment sandwich, the bitter parts were easy to ingest, and I managed to make it a stronger work (and not break what wasn’t broken.)
I’m known as a hard-core critic. But I’ll learn from this, and along with making a bigger, better book, I’ll try to be a more careful, considerate editor.
Here are the killer 13. They ROCK.
From my Austin critique group Novel-in-Progress:
John R. Jones, children’s illustrator
Melanie Typaldos, author of Celeste and the Giant Hamster
Melissa Gaskill, Travel Writer
John Burch, 3D animator and sci fi writer
Cindy Phillips
Mark Geppert
From Verla Kay’s Blue Boards, the most wonderful place for children’s writers on earth, as I’ve never met a single one of these writers in person, and they helped a virtual stranger:
Kellie DuBay
Alanna Infinger
Larissa Hardesty
Mary Ann
Sharon
Anne
Janel
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Writing Happy Dances
By Deanna | May 31, 2010
My favorite things in life involve high-pitched squeals. Having two girls, aged 8 and 11, help with that a lot.
Writing a good sentence will get the happy squeak from me. For young Elizabeth, it’s anything pink. For Emily, it’s achieving a high score on her favorite games.
But there’s been a whole lot of guinea pig impressions at the Roy house lately. First, Jinnie Wishmaker, my book for 9-12 year olds, was named a finalist in the Writers League of Texas Manuscript Contest. That’s top five. Whoop! The winner will be announced June 26.
I’ve also been working with a team to produce an iPhone application with an original story and some killer technology. They needed a writer, and I pitched a story that would work well not only for the current app, but also for sequels and product tie ins. That project is hurtling through production, and all three of us girls get a good squeal in every time the illustrator forwards a new set of images from the story.
There’s nothing better than seeing your characters become real! I’ve already pitched story number two with an open door for number three, and that one may go international, with the setting in Japan.
So many exciting things! Wish me luck!
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On Cheez Whiz and Seizures
By Deanna | April 21, 2010
I’ve always been told that the more adjectives you pile on, the further something deviates from what you thought it was.
Take Cheez Whiz. It is not cheese. If it were cheese, the package would just say “cheese.” At most, “cheddar cheese.” Or “American cheese.”
But no. Cheez Whiz, in addition to its aberrant spelling, also packs on the modifiers. “Processed cheese food product.” There’s no hiding the fact that it’s made of chemicals in no way resembling the version solidified from the bodily fluids of a cow.
I’ve found, in this year, two months, and twelve days since Elizabeth’s first seizure, that I’ve been guilty of modifiers. “Seizure disorder.” “Seizure-like event.”
Tiptoeing, as it were, around the thing I’d rather it not be. Seizures. Epilepsy. A life-long battle. No cure, in our case. Hard to treat.
The meds aren’t working. Elizabeth had another big one today. She was hysterical, the Keppra doing it’s job of scrambling her emotions, making her react strongly and violently to everyday events, so a big one like this sent her over the edge. Sobbing, gulping, having trouble breathing because she’s BEEN TAKING THE MEDICINE EVEN THOUGH IT’S YUCKY AND WHY IS THIS HAPPENING ANYWAY?”
We had tried easing the misery of the foul-tasting liquid. First with the extend-tabs, which were too big, and she choked. Then we tried to get the crushable pills, but the penalty for the doctor writing the Rx “dispense as written” made them $461. How are people supposed to do that? So we’ve continued the liquid, Elizabeth cheerful about it, finding ways to squirt it in the pocket of her cheek to minimize the taste.
But tonight she couldn’t walk, couldn’t get off the bed, too dizzy to move, completely distraught until she started throwing up despite the anti-nausea meds. All the side effects and none of the benefits.
“Why didn’t it work?” she asked between big heaving gulps of air.
I couldn’t tell her. I had no answers.
I can pile on the modifiers, try to change the way it sounds, put a spin on it. But that won’t change anything. A seven-year-old is afraid. And we are too.
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Pediatric Ambulatory EEG for Epilepsy and Seizure Disorders — Elizabeth’s Story
By Deanna | March 28, 2010
A lot of you know it’s been a rough year for Elizabeth, as I have posted about it before. In the past few weeks, more has happened. We did get in with the neurologist. They did take the dizzy-falling down-throwing up-migraine episodes seriously (finally!)
We’ve been having one every few weeks since November. The last one was the day of Elizabeth’s second-grade Valentine Party, but she forced herself to feel better despite being carried off the playground (our new migraine drug Maxalt helped tremendously) and attended the party. That girl is motivated by cupcakes, no doubt.
The doctor ordered a weekend-long EEG test. Elizabeth would get wired on a Friday and carry the machine around through Sunday. In the same manner that we had trouble getting appointments, we had a lot of trouble getting this scheduled. After five weeks of runaround, I finally called and said, “You have to cancel our appointment with the doctor as the test she ordered wasn’t done since you never scheduled it.” This lit a fire under them, but unfortunately, the only weekend left was during our trip to see my family and my 40th birthday.
So we had to cancel the trip, and I spent my 40th watching Elizabeth get attached to the electrodes. We did our best to have a good day.
One thing we discovered, however, is how ill prepared we were for this test. We looked for pictures of the machine so we could show Elizabeth how big or small it would be, and found very little, just one manufacturer picture that was obviously just an ad. We just happened to read a reminder on some other doctor’s site to wear a button-down shirt or you’d be stuck in the same clothes for three days. Gah! Why weren’t they telling us all this?
So in the end, I decided to use a Canon 7D to take photographs and HD video to document the whole experience. My blog’s Google ranking is pretty good, so hopefully when other parents start searching for information, they will find this and be able to show their children what to expect and feel less anxious.
I’m posting it both from Vimeo and YouTube as the HD can hitch a little for those of you without great connections and video cards that can handle it. I’ll post some stills here too, and keyword them so they will be easy to find.
Pediatric Ambulatory EEG for Seizure Disorders and Epilepsy in Children from Deanna Roy on Vimeo.
This video shows in detail the procedure for a 24-hour ambulatory EEG test given over three days for Elizabeth, who had her first seizure at age six.
Elizabeth started her medicine today. We said NO to Depakote and Topamax. We didn’t feel the side effects were worth the risk for Elizabeth, whose seizures are fairly rare and not as extreme as other children’s might be. We settled on Keppra, and can only hope for the best. I’ll post more about it as we watch Elizabeth for potential behavioral changes, but I can report that it tastes AWFUL. We have the liquid, which is allegedly grape, even though it tastes more like asphalt than any fruit. She’s practicing swallowing tiny candies so that we can hopefully switch to a pill when she’s worked up to the full dose.
We can only pray she’ll do well and stay caught up in school.
Ms. Kim wraps the gauze to protect the electrode set up.
Elizabeth plays her favorite video game during her EEG
Elizabeth with her gear for her three-day home EEG
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In honor of the upcoming ScriptFrenzy
By Deanna | March 9, 2010
Oh, hilarity.
It’s time for that screenwriting challenge of the year, ScriptFrenzy, where we write 100 pages of a new movie, TV show, graphic novel, or other script in the month of April.
I’ll be serving as ML (i.e., head honcho, cheerleader, glorious leader) for the Austin area for the second year.
And in honor of this…an embed (here’s the link shoud it break: http://www.youtube.com/watch?v=nFicqklGuB0 )
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New Year, New Medium
By Deanna | January 20, 2010
No, I’m not going to turn into a fortune teller. Actually, wait, that sounds sort of fun. I bet you can get online certification for that. Why yes, yes you can.
But back to business. I have so many talented friends, and one of them emailed me last week asking if I would like to be part of a project to create a short film this summer. He wanted to try his hand at directing, and looking around at our circle, we had a videographer, a graphic artist, a working actor, and myriad creative types. “What we don’t have,” he wrote, “is a story.”
Just a little over a year ago, I started writing film scripts. I got involved mainly because I knew nothing about it, had not spent years studying it, and therefore could completely fail at it and not mind a whit. I participated in ScriptFrenzy, adapting one of my novels to the screen as a way of trying to edit it down to the essential story. Turns out it was the perfect method for me. I realized where my story’s turning points were weak. I shored up dialogue. And ended up with a much stronger manuscript that immediately started getting requested again by agents.
But then a funny thing happened. I entered a screenwriting contest, and advanced to the quarters on first try. I wrote another screenplay, and it advanced as well. I joined screenwriting groups, and made some contacts, and upon hearing my story ideas, directors were asking to read my scripts.
This was all very strange to me. I had studied novel writing for over twenty years, and still had not broken into the industry. And here, with amateur knowledge, I was having more success with scripts than all my years of writing combined.
As so often happens in film, far more than in book publishing, things fall through. Special effects aren’t in the budget. Another script has more energy. I didn’t mind. I was having a blast.
And I’ve kept my scriptwriting exactly for that — fun. I am now in charge of ScriptFrenzy in April, and love every minute of it. Since my friend asked for ideas for what to shoot, I’ve come up with several: two four-minute comedies, a five-minute art film (which I am totally going to shoot myself if we don’t do it), and a fourteen-minute psychological thriller.
If art is about feeling that happy creative buzz, about that sensation that you are living in the moment, and taking down your impressions of life to be captured in something more concrete than time, then screenwriting is exactly what I love to do.
I still write novels. And I’m still serious about them. In fact, one is out with agents and one is under heavy revision. And with all these story ideas blossoming in the last few days, some of them might become short stories instead of film scripts.
But I am so inspired to try this new medium. The director and I meet tonight to go over script ideas and decide the level of scene changing, number of actors, special effects, and sound we can accomplish with the equipment we have.
And of course, films like this definitely make me want to stretch a bit, and reach for something lovely and lasting.
A Thousand Words from Ted Chung on Vimeo.
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Grace in the face of adversity
By Deanna | January 6, 2010
My youngest daughter is Elizabeth Grace. She’s seven, likes to paint her fingernails a new color (or two) every day, refuses to eat anything that isn’t yellow, and has a still-unclassified seizure disorder due to malformations of her brain.
For the past two days, we’ve been snagged in a sea of health care red tape. Only one pediatric neurology group exists in town, so we have to play by their rules. They won’t see her until March, and that’s only if they’re willing to make an appointment, as right now our pediatrician hasn’t jumped through the proper hoops.
Last February, when Elizabeth had a grand mal, followed by a day of dizziness, inability to sit up, stand, or walk, we ended up going back to the hospital when we could have simply done outpatient testing at one-tenth of the cost. But Circus Oz came to see the patients, so if you ask Eliza, she would tell you, “IT WAS TOTALLY WORTH IT!” Missing school for a week? Not so much.
She’s back at school today despite three episodes that can’t be classified for certain without tests. Her pediatrician thinks they could be halo-vomit-migraine patterns, but they could also be seizures with traditional post-seizure side effects. Meanwhile, Elizabeth goes merrily on her way, choosing between braids or headbands, hoping her heart shirt matches her sparkly jeans, and wishing her math homework wasn’t quite so hard. She has trouble concentrating at times and deals with pains, both real and phantom, most every evening and night. She sleeps in troubled bouts, and if she gets too stressed or deals with too much static in her brain, will simply fall asleep wherever she is (sometimes even on the bottom step of the staircase if climbing them seems too much trouble.)
Specialists are hard to come by, and it seems more would-be doctors are shying away from fields that require too much bureaucracy, or ones where it can be hard to keep the clinic in the black, with all the staff required to keep the forms moving. And at times like this, when we’re unable to treat a second-grader who might embarrass herself in front of her class at any moment by falling down and throwing up, it’s frustrating to feel that the system doesn’t work even for upper middle class families with good health insurance. I can’t imagine how much harder it would be if we were poor, although I guess we’d just park ourselves at the hospital and let the bills fall where they may.
She’ll hop off the bus shortly, thrilled to have seen her friends, bummed that she has to do homework again after two weeks off, and hopefully without any trouble this day. She doesn’t always realize when she’s having illness-related problems, when one day she can add triple digits and laugh about how easy it is, and the next will lie on the floor and cry over seven-plus-eight. That’s the job of those of us around her, to keep her calm and safe and hopefully get answers when answers can be determined, and solutions when solutions can be found.
I’m not sure what we’re owed from our health care system or what we should even expect. Maybe I want too much. But to see a doctor, one who has trained and has as much information as anyone might, seems the most basic of services. So today, that is what I fight for: an appointment. And let the answers fall where they may.
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Writers who influence me
By Deanna | December 31, 2009
I’ll end 2009 with a list of writers who make my world a better place.
Cynthia Lord. Her book Rules is probably the most re-bought and gifted book of my life. It’s about the sister of a boy with autism, and the voice is so great, the story is so wonderful, and the lessons so keen, that I can’t help but pass it to friends and family touched by autism, including my own niece and nephew.
Sonya Sones. I read What My Mother Doesn’t Know several years ago and now I anxiously await each new title. Sones’ stories are told in verse, and are so funny, so emotional, and so true. You don’t have to be a teenager to be affected by her characters.
Margaret Atwood. Atwood had me at The Handmaid’s Tale decades ago. I own almost all of her books. I got The Year of the Flood for Christmas and can’t wait to tackle it. When I forget how lovely language can be, how intricate a sentence, how delicate a description, I read Atwood.
Annie Dillard. I knew about The Writing Life but had never picked it up until this year. The first chapters resonated with me so much that I immediately began rewriting drafts of some of my novels, searching for words that were better than the ones I had chosen, hoping to elevate each paragraph beyond an idea to be communicated and into prose poetry. I’m reading A Pilgrim at Tinker Creek now, and enjoy so much how she obviously labors over every choice of a word.
Betsy Byars. I read Summer of the Swans as a girl and I still pick it up again and again as an adult to remind myself that just because a story is written for younger readers, doesn’t mean it can’t be languorous and full of meaning. I don’t have to make the book hurtle along if I don’t want to, but the story can move by its tension, not its breakneck pace.
I look forward to the authors and books 2010 will bring!
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2009 Digital Camera and Gadget Buying Guide
By Deanna | December 7, 2009
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If you want the pocket-sized camera, I still love the Canon 
This year when a family member asked for an MP3 player, I discovered this amazing little 
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