Life in the Burbs

Well, actually Miss Murrary (our neice Ella) lives in Washington, so she didn’t have to travel far to attend a special panel at the U.S. Senate on rare and neglected pediatric diseases, such as EB. The purpose of this panel was to urge lawmakers to help fund research relating to these diseases, and Alex Silver spoke on behalf of EB children and their families. His testimony is embedded below, or you can watch the full committee hearing (Mr. Silver’s portion goes from about the 103-108 minute mark). The video below contains a couple of shots of Ella with my sister Katie.

We are so grateful for the opportunity to have Mr. Silver speak before the Senate about this devastating disease. Only when there is more awareness about its effects and what life is like for EB families will there be more funding put toward researching more effective treatments and ultimately, a cure. Please pass this on to other people you know, and if you would like to know more about EB and getting involved, you can visit debRA. You can read my sister’s first hand account on her blog: teamjoella.blogspot.com.

Tonight when I went in to check on the boys, I immediately noticed Sam wasn’t in his bed. I suddenly froze because he has been known to sleep on the floor. I looked around to make sure I wasn’t about to step on him, but he wasn’t on the floor either. When I looked in Nate’s bed, this is what I saw …

This was a first for Gina and I. We knew they get into each other’s beds when they were waking up, but this is the first time I have seen them asleep in the same bed. It was pretty darn cute, and I hope they actually sleep all night like that. Nate is a notorious for squirming and kicking, so Sam may end up back into his peaceful bed where he won’t get kicked.

I meant to give this update much earlier (actually closer to the day it occurred), but I got sidetracked with other projects and am just now getting to it. We had a fun 4th of July weekend, and rather than going into too much detail, I will let the pictures tell the story.

Some of the pictures at the end of the slideshow are not from the 4th of July, but I just left them in there anyway.

This afternoon we all went to a picnic sponsored by the Forth Worth Parents of Multiples club. I don’t know if that is the exact name or not, but you get the gist. Gina has been involved in similar clubs in Charlottesville and Springfield, and it looks like the Fort Worth club will be the most active, largest and most organized of them all. This event was held at one of the member’s homes, and they have a huge backyard capable of hosting so many people.

This was not my first twin event, but it is still funny seeing all these little sets of matching children running around. Most of them have matching or coordinating (we opted for coordinating this time) outfits, and most of the younger sets of twins and triplets stick pretty close to each other. Sam and Nate were no exception. Even with so many other kids to play with, they pretty much played with each other the entire time. I guess there is some comfort in familiarity.

I have included some pictures of the different activities they had for the kids to do.

The best part of the whole event was the reaction we got in the car when we asked Sam and Nate if they had fun at the picnic. I’ll let you judge for yourself.

Our first full week in Texas was filled with many thunder storms. Sam, Nate and I went onto the front stoop to watch the biggest of these storms, and they couldn’t resist the temptation to play in the rain. Gina joined us, and we had a lot of fun splashing in the rain coming through the gutter. We didn’t let the boys venture too far out, but they still had a pretty excellent time. Here is some video I captured of the event …