Snowy Sunday

We woke up to a fresh snowfall and decided to see how Gracie would do for us in church this morning. We hadn't taken her since we started the ACTH. It went better than expected and she was a pretty good girl. Jeff did take her out at the end and talked a bit with the priest that baptized her. Father Tom gave her a nice blessing. As we left church the snow was coming down in huge beautiful flakes, it looked like feathers from heaven.

Gracie had a lot of spasms again today. I find that as we ween her off of the ACTH we are seeing more spasms. I truly hope that as we increase the Vigabatrin that they will start to decrease. We've been noticing a few "absence seizures" through the day too.

Gracie was in good spirits today. She played with her toys, as well as mom & dad. We read books, still one of her most favorite things to do. She loves to be read to and she loves to just flip the pages of the books on her own and look at the pictures. She did a little walking today and pulled herself up quite a bit. She's been bear walking quite a bit lately, it just looks so goofy. Her sense of humor was in full force today. We saw a lot of smiles and heard alot of laughter.

Gracie took a 2 hour nap today. I couldn't believe it. I layed down with her for a while. My energy level seemed to be at a low as well.

We continue to anticipate what this week will bring with us doubling Gracie's dose of Vigabatrin on Tuesday. I've been enjoying a few days of having her personality almost back to normal, so I don't look forward to the sedative effect that we have been told will probably take place.

Wishing you all a great week.

Love,
Lisa, Jeff, and Gracie