Update: Amanda has been doing extremely well (knock on wood) since she was released from the hospital. I have not had much of a chance to update the web site so I have a lot to go over.

First and foremost - She has had no seizures since the release!!!!!!!

We were also able to decrease and then eliminate the Phenobarbital. We increased the Trileptal and she has no problem taking it. It does not seem to have any side effects. The nightmares also have gone away (thank heaven). I would attribute the nightmares to either the Phenobarbital or the hospital stay. I would say I am almost entirely sure it was just the trauma of being in the hospital. She is 100% back to normal sleep wise and generally sleeps through the night now. After the stay in the hospital she hated being in her crib. We tried allowing her to sleep in an adult bed and she was GREAT! She now sleeps in her "big girl bed" and we are all happy.

We enrolled in our local Early Intervention Program (EIP) which is offered by the state to make sure children are all on schedule mentally and physically for the start of school. The first thing they did was an evaluation. We always knew Amanda was a great talker, but since Amanda is our first child we did not have any other children to compare her to we really did not realize just how great. She had the evaluation at 20 months and they concluded that her speech and vocabulary was on par with a 29 month old!! Her speech comprehension was equvalent with a 30 month old! We were ecstatic. On the other hand they rated her use of her left arm as equivalent to an 8 month old. Her social skills and her use of her right hand were both on normal for her age. We could clearly see that she needed help with the left hand and EIP recommended occupational therapy once a week. We have since started that but have not really had enough sessions yet to see a huge improvement. We will keep up with the appointments though and perhaps she will learn to use her left side better.

On Sept 5^th we went on a vacation that we had planned on for nearly a year. We probably would have cancelled it but for the fact that we already had non-refundable airline tickets. With my parents and nephew, Brandy, Amanda and I flew into Las Vegas and then drove to the Grand Canyon and Yosemite National Park. It was a great vacation and I am glad we went. It proved to me that although we were worried that she might start-up with the seizures again, you just cant put your life on hold.

A few days after getting back from our vacation we flew up to Detroit to take part in Dr. Juhasz and Dr. Chugani's study "Longitudinal Neuroimaging in Sturge-Weber Syndrome" Well this was a story in itself. Larry Gelfund (a.k.a. "Larry in Michigan) and his great family were kind enough to put us up for 2 of our 4 night stay (Larry had other obligations the last 2 nights) It was really nice to spend time with them as they are great people. Larry's son Garrett looks really similar to Amanda's cousin Brandon, so he was called Brandon for a few days by Amanda, but he did not seem to mind. Brandy thought it would be nice if they lived closer because Garret and Mackenzie were so great with Amanda that they would make wonderful babysitters (and probably would be quite competent to handle a seizure) Noel was also a pleasure to talk to since he has been through many of the tests that Amanda had scheduled. He sure has overcome many obstacles.