Friday, January 23, 2009

People in Pierpont

We haven't taken any photos of Makenna since the Christmas photos. I could write about her cold(s), her 24 hr flu that took 4 days to recover from (feedings can go horrible so fast!) or her recent medical/medical equipment information. I know for some it would be fascinating and I know if a new Pierpont parent stumbled on the site that kind of information might be enough to encourage them to post a reply or follow up with me privately? But to our family and a few others I just think it is the same all over and not worth wasting my time writing about. And I don't think a post without a photo is a good post. I visit many sites, as time allows, and if there isn't photos I don't spend a lot of time there...unless the author is a great writer with a lot to say. I could say a lot but still wouldn't be a great writer so I leave that to others! That only leaves me the option of discussing/commenting on a photo or two.
Here is a photo I have had for months. This is a group photo from the UK Genetics conference in 2007 or maybe spring 2008. I am going from memory on this fact: I don't recall where I found the photo but think it was taken at the Inaugural Joint Meeting: UK/Dutch Clinical Genetics Societies? I expect some of you to see YOUR child's geneticist in this photo. And I hope to be able to fill in some others names. I think I know who three people in the photo are but have 4 faces to three names, or I could be wrong and only have three names and all wrong faces? No, I know I have ONE right. This photo came from a search so I would be able to write to Isabel, about her geneticist. I never sent that letter. But I have been able to find much information about her geneticist after searching the web. She is very committed to her work, and very respected, and upper management in her profession...and still in this photo! I will add here that a search of one person gave me a better understanding of how interconnected the medical community is "over the pond" and how interconnected our family's could be.

What I think of this photo is, "there is a group of wonderful people with great minds!" I realize there is a lot more to their day/week/month than Pierpont syndrome. But we aren't doing much to push them for information about Pierpont Syndrome, or any similar set of symptoms. And Pierpont Syndrome has been mentioned at least 4 times in their meeting's minutes in the last 5 years so they know a lot more than they are sharing. I would like to hear from people who recognice the faces in this photo!!