Thoughts on Hand Transplants

I’m currently sitting at the Mazda dealership while my car gets it’s 5,000 mile service. It’s crazy that I’ve already driven that many miles, but it adds up quickly when you’re zoom-zooming around New England. The dealer just walked in after parking that red Miata and said “You could be driving that! You’d fit […]

Home Again

It always feels good to come home. Mom and I bade farewell to Colorado yesterday. We left the resort at 6:30 in the morning and drove to the Denver airport. The sun was in my eyes the whole way and I was irritable but I managed to get us there in one piece. We were […]

Colorado Trip, Day 8 (!!)- NFED Conference, Day 3: The Finale

Today started off with a photo shoot. Everyone from the conference was instructed to stand on the bridge that connects two buildings. We were all wearing our family conference t-shirts, with the exception of a rebellious few. Keep an eye on the NFED Facebook page for those pictures. After breakfast, Terri and I wo-manned the […]

Colorado Trip, Day 7 – NFED Conference, Day 2

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 […]

Colorado Trip, Day 6 – NFED Conference, Day 1

Once again, I woke up bright and early. I guess I really am an east coast girl. Or perhaps I would just be a morning person if I lived here. Today was the official start of the NFED conference, even though I felt like it started on Tuesday evening when a bunch of us were […]

Colorado Trip, Day 5 – Biopsy and Stuff

One of the reasons we came out to Colorado a bit early was because I volunteered to participate in a research study for EEC and AEC. It was really a minor sacrifice- I would let them take a small piece of my skin and they would grow it in a lab and study it. The […]

Colorado Trip, Day 4 – Celestial Seasonings

Today we started off with a trip to Celestial Seasonings. It was not as fun as the Ben and Jerry’s tour, but perhaps that’s a given. It was nice though. Some of the interesting things I learned were: 1. Herbal tea is technically not tea if it doesn’t contains actual tea leaves. It’s an herbal […]

Colorado Trip, Day 3 – Pikes Peak by Bike

This morning I woke up at 3:30. I rolled over and went back to sleep for a bit, but the dark corners of my mind harbored questions about the day ahead… Would I be stricken with altitude sickness upon reaching the top of Pikes Peak? Would I lose control of my bike and plunge to […]

Colorado Trip, Day 2 – Garden of the Gods

Today we started off with a quick stop to the marijuana dispensery. Well, just the outside… I guess they’re closed on Sundays. The highlight of today was visiting Garden of the Gods. We decided to take a Jeep tour so we could see more of the park and learn about the history and the geology. […]

Colorado Trip, Day 1 – Arrival

We’re here! I said I would write each day, so here we go. I am currently sitting on the couch in our suite at the Best Western. Luxurious, I know. We’re only paying $40 for tonight because when we got here they did not have a reservation for us. Thanks a bunch, booking.com! Fortunately they […]