Family: November 2005 Archives
When someone has a metabolic disorder, their cells can't properly process certain building blocks of food -- a certain kind of protein, for example. Instead of being metabolized into other chemicals that are useful to the body, the substance builds up as a poison, potentially causing high blood acid levels, mental retardation, or even death. With medication and diet, a metabolic disorder can be managed and the damaging effects averted in most cases if the disorder is identified early enough.
Within the first day after a baby is born, a nurse will prick his heel, take a few drops of blood and put it on blotter paper, and send it off to a state lab to be tested for some relatively common metabolic disorders, like PKU. Every state mandates such a test. Most parents probably aren't aware it's even been done, much less why. (Here's a table in PDF format showing which states require newborn screening for which conditions.)
But there are dozens of other metabolic disorders for which screening isn't required. Oklahoma requires screening for only two of 20 "core" metabolic conditions, and only one of 25 secondary target conditions.
I know a boy who has a rare metabolic disorder that wasn't caught by the state-mandated screening. As a toddler, he could get a simple cold and wind up in the hospital with high blood acid levels and dehydration. It took a couple of years before his parents finally found a doctor who thought to check for a metabolic disorder. Today this boy is a bright, healthy, athletic teenager. Specialists were able to teach him and his parents how to control and monitor his condition with diet and medication. They could have been spared a few terrifying years if expanded metabolic screening had been available and if they'd known about it.
The March of Dimes website has information about newborn screening tests. The National Newborn Screening Research and Genetics Center has a list of commercial and non-profit labs that will screen for 30 or more additional conditions for as little as $25. You send off for the kit before the baby is due to arrive, you give it to your pediatrician, and they have the sample drawn shortly after your child is born. You drop the completed kit in the envelope with a check for processing and wait for the results.
(Before you send off for a kit, though, check with your hospital or pediatrician. They may already offer expanded newborn screening.)
I'm not a fan of state mandates, but this is such an inexpensive way to prevent serious mental and medical problems, I wish Oklahoma required expanded screening for all newborns, as many other states now do.
But don't wait for the state. If you're expecting, or know someone who is, get a kit and have the wee one screened.
Since retiring in January, my dad has been letting his beard, which is nearly all white, grow out to what is now an appropriately Santaesque length. He intends to put it to good use by making appearances around Tulsa on behalf of jolly old Saint Nick this Christmas season.
He wore a hat and a red turtleneck on Halloween and had fun inducing cognitive holiday dissonance in the neighbor children. ("Trick or treat.... Santa?!?") He now has the suit and boots, too. When shopping for the suit, one store clerk enthused, "You've already got the beard, and you won't need padding, either!" (She didn't get the sale.)
Dad is an affable, grandfatherly sort, which he comes by honestly, inasmuch as he is a grandfather of five.
He's already got one gig. We were at an event last Saturday at a major Tulsa cultural institution and he struck up a conversation with the Claus-in-residence. Dad learned that the gentleman would necessarily be away from his post the following weekend, so Dad gave him his business card, and a couple of days ago got the call to fill in on Saturday and Sunday.
If you need a right jolly old elf to grace your Tulsa-area Christmas event, give David Bates a call at 230-6258 or e-mail him at bateswd@yahoo.com.
I've added a couple of photos to the entry about Friday's lecture on the life and music of Bob Wills: my five-year-old, in her western skirt and boots, with Ray Benson and Jason Roberts of Asleep at the Wheel. She enjoyed the lecture, and that evening when we listened to my new Bob Wills CDs, she recognized the songs she had heard Ray and Jason play that morning.
Took a couple of hours off work today and went with my wife and five-year-old daughter to a special hour-long program at the Performing Arts Center about the life and music of Bob Wills, featuring John Wooley, a writer and music historian, and Ray Benson and Jason Roberts of Asleep at the Wheel.
Wooley gave a brief historical sketch of Bob Wills' life and career and of the origins of Western Swing music. He gave his working definition of Western Swing, which he said he's still refining: Jazz improvisation, on top of a dance beat, done with instruments associated with cowboy or hillbilly music. I think that about captures it.
Then Ray Benson and Jason Roberts came up, acoustic guitar and fiddle in hand, respectively, and Benson talked about how the musical drama "A Ride with Bob" came to be, and recognized playwright Anne Rapp, who was in the audience. Benson asked rhetorically why the emphasis on Bob Wills -- there were a lot of great Western Swing bands and musicians back in the '30s and '40s. The answer is the spark, ambition, and charisma that Wills brought to the music, and "A Ride with Bob" attempts to give the audience a sense of the man as a performer. At one time, the Texas Playboys was the number one dance band in the country. Benson said that Grammy producer Pierre Cossette said that Wills had more charisma than anybody else he ever worked with.
In the play, Jason Roberts, who has been playing fiddle with Asleep at the Wheel for about 10 years, plays Bob Wills in his prime. Benson and Roberts talked about and played four songs: a fiddle breakdown, "Ida Red," "Faded Love," and "San Antonio Rose." We got to hear the close family resemblance between the old fiddle tune "Nellie Grey" and "Faded Love." You could hear folks in the audience softly singing along on "Faded Love."
They took questions at the end. I asked where we could hear live Western Swing music between visits from Asleep at the Wheel. Someone mentioned that Tommy Allsup and Leon Rausch would be performing in Muskogee on December 30. I'll have to miss it -- we expect to be performing "Bottle Baby Boogie" around our house about then -- but it should be great. Rausch sang with Wills and played bass fiddle in the latter part of Wills' career, and Allsup produced and played bass on the album "For the Last Time." Benson mentioned that there was a Western Swing newsletter -- he probably meant this one. (Afterwards I met a couple with the band Cow Jazz -- they're based and do their performing in the DFW area.) Wooley reminded us that he has a show every Saturday night at 7 p.m. on KWGS 89.5, called "Swing on This."
My daughter got to shake hands with Jason Roberts, who said he had a little girl about her age, and she got her picture taken with Jason and with Ray Benson. (UPDATE: I've added photos, after the jump.)
(UPDATE 2022/01/07: Rereading this now I remember something I'm surprised I failed to mention. Margaret Crownover, widow of steel guitarist Gene Crownover, was in the audience and spoke during the Q&A. Gene worked with Bob Wills during his final decade or so, including the reunion sessions with Tommy Duncan for Liberty Records and Bob's Nashville recording sessions with Kapp Records. Ray recognized her and someone -- Ray, I think -- recalled that she wrote a song that Bob Wills recorded in 1969, with Tagg Lambert on vocals: "Look What Trouble Left Behind.")
As we emerged from the PAC, schoolkids were beginning to line the street for the Veterans' Day parade. I wish a lot of them had been inside to hear the music and learn about part of Oklahoma's musical heritage, the music that helped their great-grandparents keep smiling through hard times.
Benson was on KFAQ with DelGiorno this morning, broadcasting over the "sacred frequency" that carried Bob and Johnnie Lee Wills for many years. They talked about the lack of a Western Swing Hall of Fame, something that belongs in Tulsa. (For reasons I don't understand, no Western Swing artist has ever been inducted into the Oklahoma Jazz Hall of Fame.) The presence of such a facility would be a draw for a niche tourist market -- attractive to a small but intense fan base. There would be good synergy between Western Swing tourism and Route 66 tourism -- transplanted Okies provided a fan base for the music in 1940s California. And a Western Swing museum would be a resource to get the music into the schools, where it could be introduced in the context of Oklahoma history and modern musical history.
I'm glad the PAC set the program up, but I wish more people had gotten the word. There was plenty of space for more, but because they mentioned limited seating and the need to call ahead to reserve a seat, I had the impression it was a much smaller room and would fill up quickly, an impression reinforced when I called Thursday to reserve seats and was told that there were only a few left. I would have spread the word if I'd known the room was so big.
It was a nice start to a day that ended with family, a cake, candles, ice cream, and two CDs: "For the Last Time" and "Tiffany Transcriptions No. 2."
Today our little chrysalis changed color from bright green to almost black, which means a newly minted monarch butterfly is about to emerge. I've set up my son's Digital Blue microscope to take a frame every 10 seconds, so that we can capture the emergence even if it happens when we're asleep.
That's the exciting news from here. That, and I am now the third member of my family to get the cold that's making the rounds.
UPDATE: Exclusive video! It's grainy, it's out of focus -- limitations of the camera -- but here is time-lapse video of the butterfly emerging from its chrysalis (5MB AVI file). The time-lapse was a frame every 10 seconds; the video plays back at 15 frames per second, so we slowed time down by a factor of 150. If I had to do it again, I'd use a much smaller delta t. The actual emergence took about five minutes -- only about 2 seconds of the time-lapse video.