1p36 trip to Wisconsin

Miss O's chromosome abnormality is called 1p36 deletion. 1p36 deletion support & awareness hosts a conference every year for families, and we move it around the country so that everyone has the chance to attend. Two years ago it was in Boston, and we were able to go. Mike travels to Boston to work fairly often, so he scheduled one of his work trips around the conference weekend, and the girls and I flew there on Angel Flights. It was a great time, and really wonderful to learn more about 1p36 deletion, and meet other families. This year the conference is in Salt Lake City, and we just cannot make it. So one of our Wisconsin friends scheduled "1p36 Fun Days" in Madison for those of us in the Midwest who can't make it out to Salt Lake City. The kids really did very well on the ride there and on the ride home. Ato T was really stressed out being away from home for that long, but did quite well considering the circumstances.

The girls and daddy watching TV in the hotel room.

Ato T napping while the girls and daddy watch TV.

Picnic fun by the lake!

Miss O and her friend Jordy.

Jordy is the other child with 1p36 deletion that lives in the cities, and they were able to come as well. What's amusing about the weekend is that we ended up being the only 2 1p36 families to come with our kids. The 2 families that live in Wisconsin both ended up with very sick kids on the day we got together. We're hoping to try again here in the cities sometime in August. For those of us who were there, it was a lot of fun!