New Braces for Evan

It's been almost a year since Evan was fitted for braces and they started bothering his feet so we knew it was time to get new ones. Yesterday we took him to the orthodic center to start the process of having new braces made. Last year he screamed like crazy and rocked the building. This year was an improvement but he remembered being scared before and cried a lot. It was a rough appointment, but better than last year at least. Hopefully next year he'll be fine with the visit. We'll go back in a few weeks to try them on and make sure they fit perfectly and hopefully that appointment will be easier.

We're Becoming Lobbyists

On March 7th there is a lobbying day for TSC research. There will be people from all over the county talking to Senators and Congress Members and asking them to sign their name to a letter going to the Appropriation Committee asking for a $10 million increase to the $4.3 million budget for TSC research. Rob and I will be joining the lobbying effort and we will also attend a charity dinner for TSC that evening. Neither of us have ever done anything like this, but it should be an interesting experience.

6 Weeks on Vigabatrin

Evan has been on Vigabatrin a little over six weeks now and although the we have seen some improvement, it's still not effectively managing his seizures. Although there has been a reduction in overall seizures, this doesn't seem to change with the weekly increases:

week 1 - 13 seizures
week 2 - 10 seizures
week 3 - 13 seizures
week 4 - 7 seizures
week 5 - 8 seizures
week 6 - 12 seizures

On the up side, he had 11 days in January with no seizure activity and we haven't seen results like that since last July.