Erin Gets a Hearing Aid

I just got a chance to watch this video. It’s about a little girl with AEC, (another form of ectodermal dysplasias) getting her first hearing aid. I met Erin and her mom and grand mom at the conference. We only chatted for a short time but I can tell they are awesome people. I hope […]

What My Friends Are Up To

Well, so much for writing more frequently! I’m still on my Facebook fast, but clearly that has not magically resulted in me writing more. One thing at a time though, right? Right now I’d like to share with you what a couple of my EEC buddies are up to. My friend Terri has started blogging […]

What’s Going On?

Last weekend my family converged on an island in Lake Champlain, VT. Tents were erected, bonfires were ignited, lots of food and drink were consumed. It was a lovely time away from all the distractions of the modern world. Technically, we did have cell service but I let my phone die the first day and so […]

Conference in Review

Last week I attended the 33rd annual NFED Family Conference, which was held in Columbus, Ohio. There was a record number of people registered for conference – over 400 – but it did not feel overcrowded at all. This was my 5th conference (including the one I went to way back in 1996). Every one I’ve […]

Shameless Self Promotion

Opening Night at the 2014 NFED Family Conference. Each family was tasked with making a family crest or banner to display on a wall in one of the shared spaces. I began creating a flag to represent my blog – EEC Chick. As I looked around the table at the other EEC Chicks around me, […]

Music Heals the Soul

When I was a kid, sometimes Mom would go out in the evenings and Dad would supervise our after-dinner activities, which consisted of fidgeting around while trying to complete homework assignments on the dining room table, having a “bed-time snack” and then being wrestled into pajamas and teeth-cleaning routines. Kris and I would get pretty […]

Calm on the surface, but paddling like mad underneath.

Hello! Just a quick update to let you know that I am still alive, although rather tired. Earlier this week I took a quick trip to Chicago for work, but ended up stuck in the airport for nearly the whole day on Tuesday. I didn’t get home until 1am, and I’ve been feeling pretty sluggish […]

Eye Feel Fine

On Monday afternoon I went to my eye doctor for my yearly checkup. As I was driving there, I was thinking about how good my eyes have been doing lately, and that maybe seeing the doctor every year wasn’t really necessary. Still, knowing all the eye issues many of my EEC friends face, I figure […]

The Umbrella Story

What super power would you have? Why, invisibility, of course! Sure it would be nice to fly, or shoot lasers out of my eyes, but to be invisible . . . now that would be really cool. One spring afternoon in Music class, we were learning a song about the rain. On the handout there […]

Exploring Ectrodactyly with EEC Chick

As the name implies, ectrodactyly is a prominent feature of EEC. Ectrodactyly just means missing fingers (or toes). If you ask me about it, I’ll say that I don’t think about ectrodactyly much and that it really hasn’t been that big of a deal in my life. Which in some ways is true. It has not caused me much physical […]