Tuesday, August 07, 2007

Children of Marfan

July was a really good month for us. So good, I didn't have time to blog apparently. The big things were: two trips, one stay-at-home-mini-vacation, Brian's birthday, getting iPhones, and a job change.

Our first trip was to Palo Alto for the National Marfan Convention. We had a really good time. I got to re-connect with my heart doctor and heart surgeon from Stanford and we got to meet a lot of other people with Marfan Syndrome. We got some good information too.

Here's Brian just after we arrived:

One of the biggest surprises was that my heart surgeon, who was a speaker at the event, actually used echocardiogram video of my heart in his presentation - only he forgot to take my name off of it or ask my permission! Probably not such a good idea to use the marfanoid lawyer's medical records to violate HIPPA laws. Oh well. Good thing he's in my Top 5 Favorite Human Beings list or else he'd really be in trouble. Here's me and the guys that probably saved my life:

Like I said, I also met other marfanoids while we were there. (During our stay, we determined that the following were also acceptable terms for persons with Marfan Syndrome: children of Marfan, Marfanite, Marfanaut, Marfanid, one who has been marfed, and one who has been given the gift of Marfan.) Not all marfanoids are as tall as me, but there were some who were. Even taller actually. Here's me again with my surgeon and two other women he's operated on; one is 6'6" and the other is 6'8", I believe.

Oops, it's time for bed now! Gotta finish this blogpost later. Damn, I'm a slacker.


Nick said...

What about Marfanatic? Picture it being said by Marv Albert- "That's Mar-FAAAAAAANNNN-Tastic!"

Allison and the Angry Inch said...

are you ever going to post here ever again?

Cladeedah said...

Well maybe if I ever got any comments anymore! I know you lurkers are out there - I can see the hits to my blog. Comment! Intake-outtake, people!!!