Emma's Grace

Let’s break the silence. Wear purple to support your loved ones with Epilepsy. It’s National Epilepsy Awareness Day. It’s time to support and educate. Show the world how many people are affected by Epilepsy.

Wear your purple. Let people know that you love Emma.

I’ll be wearing purple. Will you?

Tweet This Post 

The past months have been busy, to say the least.  Emma has had her meds adjusted several times, with the end result being a return to Topamax and Vigabatrin.  Her seizures are mostly under control again, but not completely.  She has also developed a new type of seizure, a head drop.  If you don’t know what that is, she basically goes totally limp (thus causing her head to drop) for about a half-second.  She also has some cute new glasses, which have helped her vision tremendously.

Along with all of that, which would be plenty all on its own, we have also started some more forward-looking consultations with the neurologists.  Last week Emma saw Dr. Chugani, one of the top (if not the top) neurologists for IS.  He is the Chief of Pediatric Neurology at Children’s Hospital of Michigan, where Emma ends up when she has to go to the hospital.  Following up on that visit, Emma will be going in for a PET scan and an MRI, after which we can discuss what options are available.

Emma continues to have a very busy schedule, with school two days a week, and private therapy another two days a week.  She’s been doing well, despite a regression during the period of uncontrolled seizures we had in December and January.  Along with plenty of help and persistence from Mommy, she is even mastering drinking from a sippy cup; this is a major step for Emma, as the only drinking she was doing before was nursing.  She even seems to be communicating when she wants a drink, with a sort of licking motion.  Learning these types of communication behaviors is an important step for all of us, as it is a tremendous help for quality of life and skill advancements.

There are many more levels of details to all of the above, of course.  But this at least gives an overview of how things have been going for our little angel so far in 2009.

Tweet This Post