Cha-ching...

Something I just learned...did you know that both current Canadian and Mexican series of banknotes have raised symbols - known as tactile markings - for easy identification by the blind or visually impaired? European currency uses different sizes and colors. It's only US currency that is lame...No matter how organized a blind person in America may be by folding their bills and such, they still must initially depend on a seeing person to distinguish between the differing amounts of the bills. Get with the program, America!

I am looking forward to that commemorative Louis Braille coin however. And it will have braille on it. I think it will be out by the 200th anniversary of his birthday in January.

UPDATE: Stay tuned for our 3rd Annual Big Fat Medical Vacation...that is, we'll be heading to Los Angeles for the yearly eye doctor visit in August. Zelda needs to see her retinologist. California here we come...

Boom, boom...

That's how Zelda sees fireworks.

So, the twins have been around for three 4th's of July...and maybe they are just starting to get the whole 'holiday' thing. They are grasping the party-idea, picnics, special events, etc. We did the super cool neighborhood parade - Zelda got to pet a chicken! - then there was the big pot luck in the park and lots of time spent in the 'water pool'. I think we'll have to do our own float in the back of Evan's old Chevy truck next year. From our house, we can see at least 4-5 shows of fireworks across the city. Creed watched for about 10 minutes and with prompting, said they were "pretty". Zelda spent the time practicing her curb jumping and said "Boom, boom" every now and again.

I had a 4th of July once that was magical. I was 16; it was summer camp. We were sitting on the trunk of a car in a grocery store parking lot and watched the fireworks over the horizon of a teeny, tiny town near Califon, New Jersey. I remember the air, I remember the company and I remember seeing those flashes of colored light in the sky. Another memorable one was on an inlet in a small coastal town in Maine: little sailboats, good friends and beautiful modest fireworks over the bay. Then there were several down on the mall in DC complete with pot smoke, the Steve Miller band blaring from a boom box and the memory of the Washington monument against a beautiful display of color.

I know Zelda will someday have those moments. She'll have the friends, smell the night air, and capture those slices of life. But I mourn for her. I want her to see the fireworks. I want her to see the lights of Paris when looking out over the city from Sacre Coeur. I want her to squeal with delight when she sees the fireworks on New Year's Eve in Florence. I want her to see the Northern Lights of a summer in Maine - the way they pulsate blue, green and hazy white. I want her to see a lunar eclipse while laying on her back in a canoe on lake or a meteor shower from her sleeping bag in a field on a hot August night.

I don't give a damn about Zelda missing out on cartoons or fashion(!) or make-up or haircuts or driving or even the Mona Lisa. She'll read and listen to TV or movies if she wants to. She'll travel to foreign countries, visit museums and eat in the most amazing restaurants in the world if I have anything to say about it.

But it's missing those damn fireworks, those sunsets, those silent city lights that really, really, REALLY pisses me off.

Aqualung...

"Sitting on a park bench...
snot running down his nose..."

Thanks, Jethro Tull...that image has remained with me since 1972 and now has entered my real life - on a daily basis. I have snotty nosed kids. Every day, clear to opaque, to yellow - no green yet. Sorry I have to be so graphic but one of our newest tasks is teaching them to blow their noses or at least letting us wipe them. When, oh when, will they dry up? Thankfully, aside from major post-nasal drip in the morning, they have no other symptoms.


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On another note: we are on something like day 30+ of insane temperatures. These days, 95 degrees is considered temperate. Most days around 5pm are between 98 and 102...Creed cries for the "water pool" and Zelda wants to swing in the "hemmok" - and so do I, with a caipirinhia in hand.

Sleep away camp in Maine...

No, not quit yet. BUT, Creed and Zelda did start their summer Montessori day camp yesterday! They'll go 5 days a week for 7 weeks. We dropped them off at 8h30am with no tears (at least not on their part) and their super dedicated lead guide checked in with me at noon. Zelda had eaten her whole lunch - Creed hadn't. Zelda was napping on her little cot - Creed was watching the others kids nap as he desperately tried to keep up his head from nodding. They had a great day. It helped having Mariellen (Z's TVI - that's Teacher of the Visually Impaired) attend the first hour and help acclimate her to the classroom. These kids are freakin' superstars.

While they were at camp, I attended the opening remarks at Texas Focus - a conference for the Texas Association of Parents of Children with Visual Impairments. Also known as TAPVI. The opening speaker was the executive director of NAPVI - hope you're following the acronyms... Anyway besides the organizational business, on a more personal note, she spoke of her son - who as a child developed cancer of the eye. He's now pre-med, a junior at Cornell, and studying in Hong Kong this summer. Another superstar...

Possessed by aliens...or Zelda has blue eyes...

So, on Sunday, upon waking up from her nap, Zelda had a seizure. It went something like this: She woke up fussy and burning up - as if she had a fever spike (both twins have been exchanging a snotty nose for weeks). Then she got very quiet and stood very still. Then she curled up on the floor. Now up until then, those things can all be normal. Music was playing and she often quietly listens. She likes to fake napping and often she'll say "I sleep" and lie down. But this was different. I spoke to her and she didn't respond, not to the offer of milk, or to play with my keys, or to the "B's" - aka the Beatles. I knew something was up. I then saw the symptoms (her typical seizure-like signs): she smacks her lips softly, she gets pale, her lips turn a dark brownish/red, and her hands feel like jelly. I rolled her onto her side, rubbed her back and spoke to her and called for Evan. We gave her an extra dose of Keppra. (She takes 1.5ml, 2x/day) She continued by gagging a bit and had shallow breathing but all of this lasted just a few minutes. Then she fell asleep on my chest for an hour. AND we didn't call 911 - for the very first time, we handled it ourselves. It still sucks, it's still scary, and I still hate that this continues to happen. We gave her Tylenol and her fever seemed to drop. They say these are 'breakthrough' seizures, as she doesn't seem to have them when she's feeling well. I'm just frustrated with the pattern.

BUT, here's the weird part: when she woke up, her eyes were open - she rarely opens them. And they were blue! Her irises were actually a beautiful shade of blue and there was a dark pupil-like spot in colored pool! My little girl is a blonde-haired, blue-eyed beauty! On the rare occasion when Zelda opens her eyes, we'll see white with a dark dot. We have photos of her as a baby with her eyes open and I always assumed her eyes were black. BUT NO!!! They're blue...Evan confirmed it, he saw it, too. I thought I was dreaming. I thought she was hosting a blue-eyed alien. It was magical and I haven't seen the color since...

RIP's and Bienvenues...

- RIP YSL: Yves Saint Laurent, the great French couturier, prodigy of Dior, and avid supporter of women wearing pants, died at the age of 71 in Paris. Each time I wear a man's tuxedo to a formal event, I think of him.

- RIP Allie: beloved dog of our friend Jason. She was a dear, gentle dog who would visit and let the kids roll all over her. Creed named his stuffed puppy "Owie" after her.

- BIENVENUE to the newest set of preemie twins: Emmanuelle & Max, born to friends Merritt & Pierre on the west coast. Can't wait to meet Manu & Max...They'll join other sets of twos in our world: Isabel & Michael, Jack & Alma, Jack & Ellie, Harriet & Maxine, Caitie & Georgia...we'll all have to have a party

And speaking of parties, tonight is our "50/50" party: A century of style. Evan and I have now both turned 50 in the past 2 months. And I'll tell you all now, it only gets better...

Spring medical sweeps...kicking off the summer season...

So we just did a week of doctor's appointments. Most kids have a pediatrician and maybe a dentist. Zelda and Creed have a neurosurgeon, an Infectious Disease doctor, a pediatric opthamologist, a neurologist, a retinologist, as well as a retinal surgeon in LA and a Toxo Team in Chicago. Oh, and their pediatrician. We'll save the list of Zelda's therapists for a later entry.

Anyway, last week was our trip to Houston to see our favorite Tiki Gods - the neurosurgeons. As it turned out, the residents & interns have moved on and the other head Tiki has gone off to San Antonio so only one lone god remains. The twins have to check in every so often and have head CT's to make sure that their shunts are draining the fluid from their little brains in an appropriate fashion. They have had more CT's than I can possibly count so this time we were well prepared despite the fear of having to sedate them so they would hold still long enough. Anesthesia is definitely not their favorite experience nor is it mine when a 2 year old is involved. Luckily, they managed to avoid the sedation...could we possibly make it through 2008 without anesthesia? Their brains look great and the shunts are working. Creed's ventricles have actually shrunk and Zelda is perfectly stable. They will have these shunts throughout their entire lives and we just always will have to be aware of possible malfunction. But so far, so good!

This week, we saw their ID doctor. We check in with her to follow any reactivation of the evil Toxo Parasite. They'll live with this for their whole lives as well. C & Z are doing great! Having had the twins on their drug "cocktail" for the first 17 months of their lives has hopefully drowned those damn bugs - as least for now.

And then we saw their opthamologist...Creed's strabismus seems to be evening out. Months ago, his right eye - which has a scar on its retina from the Toxo - would turn in on occasion. Now it hardly turns in at all. Creed was a perfect patient. He performed like the perfect little show monkey - taking the tests, sitting still, curious and quiet. La petite Z-bomb earned her name accordingly. She exploded. No one can get near her eyes. She seals them closed and will have to be sedated this summer for a retinal exam. Damn! 2008 will not escape the anesthesia curse...If the Toxo was to rear its ugly head, it would most likely appear in the eyes so we have to be vigilant.

Anyway, we're readying the twins for their Montessori summer camp program. That means a visit to the pediatrician for their immunization records...