I’m running out of steam on this one blog post a day business! I didn’t take many pictures today.
This morning we had a motivational speaker who was interesting. He actually has a child with a rare disease too (though not ectodermal dysplasia). He had some people get up and share their experiences which was interesting.
My ‘Adult Life 101’ session went well. I got there early and had everything set up all nice. The group was not as large as I had hoped, but we were still able to have a decent little discussion. We really could have used more time though.
After that it was off to a lunch meeting to discuss the NFED blog. We brainstormed some ideas for the next couple of months. Once again time ran out. It seems like time is flying here!
The afternoon was the syndrome specific session, where we get to meet with other affected people and doctors to discuss various topics.
Tonight was the talent show, which was a dinner show this year. For some reason our servers were really angry and kept slamming our plates down. I guess they didn’t like the entertainment.
We then hung out on the patio for many hours. In fact, right now I’m actually writing this from one of the patio areas while my fellow EEC gang talk about how we can better serve older people with EEC. I’m listening!
In other news, back east, my friends the Claire family spent the day in Boston having little Ronan’s first cleft lip and palate evaluation. They will have to make many trips down in the coming years. It will be a hard row to hoe, but they are an amazing family and will power through. Dennis keeps using a hashtag which I will have to steal- #eecstrong
Definitely gonna make up some T-shirts.
In conclusion. Here’s a selfie of the group I’m with right now.
Tomorrow is the last day! Suzanne and Will will be leaving. So sad!