Obligatory

Taken just before the screaming began from threepeat

Merry Christmas

from us to you

The Long Break

The dearth of posts here over the last two months has not necessarily been by design so much as imposed. I knew the Fall would be busy - I just had no idea how busy. Doctor's appointments for the Boy, the Girl and myself have been ongoing and the accompanying tests involving needles and urine cups and electrical leads and eye dilators and contrast dyes and giant scanning devices and healthcare professionals (both the sympathetic, informed variety, as well as the idiotic and disinterested type) have seemed endless. And we aren't done yet.

Keeping a household running with three young kids is trouble enough, but add appointments out the wazoo and the whole house of cards comes tumbling down. Add to that a little viral bug that had the house upchucking and a PC that finally breathed its last and needed to be replaced, well, the blog got the short shrift. Most of my family updates have been reserved for short bursts on Facebook (it's not bad for that.)

I wish I had something to post re the Ehlers diagnosis but we have yet to finish all the appointments and collate the data. The Boy and Girl have been given a thumbs up from the cardiologist and have no heart issues... yet (they'll get echocardiograms once a year till they're 18 since the problems usually develop in the teens.) My eyes are fine - at least medically - and I'm cleared there until next year.

I'll try to be more vigilant in posting especially as more results show up, but bear with us - this is taking a while.

Gene-y Out Of The Bottle

We paid a visit to the friendly geneticist yesterday. In case you've never done this sort of thing let me offer this bit of advice: Make plans for a long day.

Three and a half hours was about how our appointment timed out. That's a long time to hang out in an exam room with a 5 year old, a 3 year old, and a 1 year old, even with crayons, coloring books and assorted diversions. They began to erode about an hour in and continued to do so until the end. Parental patience was tested.

There was a lot of talking. Family histories were detailed to the extreme. The slightest medical note was explored. Every facet was investigated. It's weird to fine tooth so many lives and have the results charted into their appropriate slots on an ever growing family tree (in our case, a bendy willow.)

By the end we had three demonically bored kids, two frazzled parents, and one remarkably patient physician.

We also had confirmation of that which we already knew.

In thirty years of practice the Doctor has had, by her estimate, roughly a thousand or so Ehlers Danlos patients and is quite familiar with the disorder. She also has EDS herself and she, like myself, begins each day with 800 mg of ibuprofen. She gets it.

So...

She's taking care of referrals for the Girl and the Boy to a pediatric cardiologist, orthopedist, rheumatologist, and a pediatric genetic opthalmologist because detached retinas and other eye issues are apparently more common than we thought. Annoyingly the Boy must first be "officially" referred by our pediatrician to the very same geneticist he just spent 3.5 hours with so that everything is copacetic with the insurance company since the appointment was "officially" only for the Girl.

I'm scheduled to visit my own doctor next week to get the referrals I need to the same specialties.

I tell you, it's one thing having to schedule one family member who suddenly has to see a host of physicians; it's an organizational nightmare when we have to arrange those appointments for three of us.

I have the distinct impression we'll be busy this autumn.

The Beautiful People, The Beautiful People

With all our worries about the recent EDS diagnosies I would be remiss if I didn't point out the advantages of having the disorder.

You can, for example, entertain your friends with freaky body manipulations - always a hit at parties.

With EDS, yoga is a breeze.

The disorder makes washing one's own back effortless.

And then there is the more superficial advantage: EDS has been called, accurately or not, "The Beautiful People's Disease." It seems that actors and models have it (or the associated, but somewhat more benign, Joint Hypermobility Syndrome) in a greater proportion than does the general population. The disorder tends to make those who are afflicted slender, longer-limbed, with delicate, long fingers, and with skin that is often quite soft and flawless. In runway models, the loose joints allow for that classic cat-like walk with hips that swing easily from side to side.

A quick google brings up articles speculating that Micheal Jackson had it. Johnny Depp is said to have been diagnosed as well. Mary Louise Parker, David Caruso, Gwenyth Paltrow, and Katie Holmes have been discussed. Two of the tween sensation Jonas Brothers are mentioned. British model Erin O'Connor is one of many, many models that are frequently part of the conversation (the young model Marissa Irwin lives with the rare and painful Arnold-Chiari malformation - a direct result of her Ehlers-Danlos syndrome.)

Certain athletes, particularly swimmers, benefit as well from the anatomical oddities conferred by EDS. The great Australian swimmers Ian Thorpe and Jodie Henry have it and gold medalist Micheal Phelps is rumored to have it as well.

My wife and I had discussed the Girl's unusual attractiveness before all this. We've joked nervously about the strangely womanly way she tends to pose or stand - hand on hip with palm turned out, leg extended, and opposite hip pushed out. It looks very modelesque and isn't a typical pose for a preschooler. It now makes sense and seems quite natural for someone with joints as loose as hers - it offers more stability and comfort. Her skin has always been smooth as velvet with a flawless purity that more than a few people have coveted. It isn't hard imagining her becoming one of the "Beautiful People." So perhaps all the pain, misery, and discomfort she'll face will be worth it in the end...

But I doubt it.