Rewind...and Fast Forward

Hi. My name is Edna and I live in Connecticut. My husband Gene and I have been married since 1997. We have two beautiful children. Our son Christian is 4 years old (DOB 4/20/03) and our daughter Carriella is 2 (DOB 11/11/2005).

This was my original attempt at starting a blog back in October of 2006:

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Blog...schmog

I am now testing this blogging thing. So much hype...is it deserving of so much attention? Or is this just another connector that will eventually drive us apart, like cell phones and Blackberrys and e-mail and the like; those techno-gadgets that interrupt our thoughts, our conversations our meaningful face-to-face interactions...Such cynicism, I know. I am a communicator who should be embracing such technologies, and trust me, I am as addicted to my "Crackberry" as any other corporate cog out there. Perhaps that is the very source of my cynicism--perhaps I long for a day of good conversation that isn't peppered with e-mails, phone calls, IMs, etc.

Well.......let's see where this takes us.

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For perspective, I thought I should keep it. I wrote the passage above after attending a communications seminar in NYC. I didn't have much time to devote to the blog. I was experimenting with it from a communicator's perspective; to better understand the inner workings of the bloggosphere and how I might leverage this emerging communication tool for my company. Life at work went down the toilet, so I abandoned ship.

At the time, I was so focused on my job and the not-so-pleasant situation there that my blog--had I pursued it at the time--would have likely focused on the art of communication, punctuated by the obligatory angry comments about corporate politics, discrimination and waste of human potential that consumed my thoughts...at the time.

At the time, we didn't know why our 11-month old daughter was so far behind developmentally, why she was such a peanut, why she had reflux, why it had taken her 3 months to smile, 8 months to sleep through the night, 9 months to sit up... We were hoping she'd just catch up in her own time. I mean, she was only 4 lbs 15 oz when she was born. Her skin hung off of her like a Shar Pei puppy. She had IUGR--I mean OF COURSE it would take time for her to catch up, right??

Carriella started in CT's Birth-to-Three program at 13 1/2 months. She had some feeding issues--couldn't stand textures and choked horribly anytime we tried to introduce anything that wasn't smooth as silk. She has a physical therapist, a speech therapist, a developmental therapist and a developmental associate--giving her a total of 5 hours of therapy/week.

She had a normal EEG and MRI last summer, indicating no neurological issues. So when the neurologist recommended genetic testing, my husband and I were like "Huh??" He explained that there are lots of genetic syndromes that can not be diagnosed by any of the tests that had been done. So we went ahead and scheduled an appointment at UCONN with Dr. Greenstein. On February 7, we had the evaluation and blood tests. Upon evaluation, Dr. Greenstein mentioned Williams and velocardiofacial syndromes. We avoided looking either of them up; we'd wait for the results. On Valentine's Day (less than 2 weeks ago) we learned that our precious little girl has Williams Syndrome.

Well, it has been about 16 months since my first attempt at blogging. The catalyst for this second attempt was Carriella's recent diagnosis. We hope that this blog will:

• Provide timely updates for friends and family
• Be a resource of "Insider Information," where families can share their vast experiences with and knowledge about WS with each other-- to supplement what we read and what our doctors tell us
• Continue to drive awareness about WS--who knows what ideas we might generate together?
• Serve as much needed therapy for me (self-serving, yes, but so what? God knows we all need an outlet. :-))

Thanks for your time--I look forward to hearing from all of you! I will do my best to keep this blog up. Pictures to come!