March 28, 2007

Well, that pretty much says it all! This is our official logo for the Moss Mania team and we had T-shirts made! They look great and are black (is there any other color?) with (moss) green type. We were really overwhelmed when the T-shirt company next to Rob's studio donated the silk screening and this is our official shout out to Billy at (WARNING: don't click on this link if you're easily offended) Rob went and "helped" with the silk screening but he quickly realized that Billy wouldn't be able to get them done by Saturday if he kept helping, so he turned his attention to folding instead. The kids were so excited when Rob walked in with the big bag of shirts and immediately wanted to wear theirs. They ran around the house, bringing the words "moss mania" to life and stood still for about 20 seconds so we could snap a couple photos. Here's a preview...

If there was a contest for who has the best shirts (and isn't everything a competition really?) we would surely win!! Thanks Billy!!!!

March 14, 2007

Vigabatrin, Vigaba-GONE!

We have dutifully increased Evan's Vigabatrin every week, but there is no downward trend in seizure activity, so it's time to begin the process of weaning him off of it. Each drug wean comes with a note of sadness. It means that this medicine doesn't work for him and with each failed drug, the chance of a different drug working decreases.

Now the big question...what is the next step? We can try another drug, but the chance of anything working is very slim so we'll probably try the Ketogenic Diet first. We will start the diet through Johns Hopkins and their schedule for April is full and we can't do it in May, so I guess we're looking at June. That gives us 2 months to eat all the carbs and sugar in the house!

March 11, 2007

Tuberous Sclerosis Lobbying Effort

Last week Rob and I went to Capitol Hill to meet with four different congressional offices. We didn't meet with any of the congressmen, but we met with staffers for Jim Moran, Virgil Goode, Eric Cantor and Bobby Scott. The appointments seemed to go well and we are hoping the congressmen will sign their names to a letter going to the appropriations committee asking for increased funding for TSC research. There have been great medical advances made to better understand how to treat Tuberous Sclerosis patients, but there is still a long, long way to go.

After the day on the hill we went to a charity dinner for Tuberous Sclerosis that was organized by the TS Alliance. The dinner was impressively organized and every aspect of the event (location, food, wine, etc.) was donated to the cause so 100% of the money raised from ticket sales, silent auction items and live auction items goes directly to the charity. My mother sent two quilts, one she made and one made by her craft group and Rob donated two framed prints from his trip to Africa last summer. They were all in the silent auction and at the end of the night, our family alone had raised $1300 for the TS Alliance!

The dinner was also a great opportunity to talk with other families effected by TSC and doctors who specialize in the treatment of Tuberous Sclerosis. I was a great experience and we're looking forward to doing it all over again next year.

There is only one thing I would change -- I sprained my ankle the weekend before and I alternated between crutches and a wheelchair the entire day. I hope I never repeat that!