February 19, 2009

Congressional Lobbying Effort

We are joining the lobbying effort for TSC research funds again this year and are hoping for another successful outcome! Last Fall Rob was lucky enough to sit on the panel that reviews the research grants submitted and got to see all the incredible programs being funded to search for better treatments and a cure for TSC.

There are some really brilliant minds working toward these goals and I am thankful for their dedication and commitment.

There are only a few days to go before we hit Capitol Hill and start making the rounds with the Virginia representatives. We are double-booked with appointments but we'll make it all work out!
We'll be bringing with us a collection of personal stories from Virginia families and the TS Alliance will be bringing a petition. If you want to help, please consider signing the petition...


There are almost 5000 signatures already!

February 04, 2009

Hooked up

Here is a slightly fuzzy shot from my phone that illustrates the last couple days...hooked up to the video EEG, watching Spongebob and eating lollypops! We also spent a lot of time in the playroom and had a blast in art therapy -- not sure who it was better for, me or them!

The news is all good and I'm hoping it stays that way. Nothing to worry about on the EEG and no news is good news! We checked out of the hospital today and will head home tonight.

We're in NY for a Video EEG -- a few snaps

We are staying at the Ronald McDonald House of Long Island which is pretty amazing. Everyone here is so wonderful and it really is like a hom awa from home!

Before Evan met with his doctor and checked into the hospital for monitoring on Monday we played at one of the nearby playgrounds to kill some time and burn off some energy.

Then we checked out the greenhouse and fish pond in the hospital. We timed it well and even got to feed the fish.

February 01, 2009

Evan wins the battle but his brace loses

Often before my first cup of coffee Evan says to loudly and very serious, "Mom, are you ready to battle?" He hands me a Pokemon and I'm expected to know who's in the closed Pokemon Ball and what powers it possesses to be a worthy opponent to Evan's yet undefeated Pokemon. A few days ago it seems Evan "battled" with his brace and it was thoroughly defeated...

He didn't do anything out of the ordinary but was just being his normal crazy self and caused the brace to crack at the ankle. Guess these aren't much use anymore. Luckily he just got fitted for new ones and they'll be ready in 3 weeks. This will send us back to see if they can do a temporary fix on this one but I'll be impressed if they can salvage it!

His fitting last week was pretty amazing -- it was the first time he had the casting done that wasn't traumatic and emotional for all of us. It was so overwhelming for him when he was younger. Here's a snap of the casting process...

I hope the ease of this appointment is a sign of Evan being able to tolerate testing better. Tomorrow he will be checked into NYU Hospital for a Video EEG and it would be great if he doesn't freak out when they glue all the EEG sensors on his head. We'll all be keeping our fingers crossed!