Archives for the month of: February, 2009

Grace is nearly the end of week two (Monday) on a new medication called Banzel.  The medication  was approved for sale in mid January and used to treat tonic seizures and Lennox Gasteau Syndrome (which Grace essentially has).

We are on a four week titration to the full dosage (so half way there) and Grace’s seizures have decreased significantly.  Before we started Grace was having between 20 to 25 clusters a day now between 5 to 7.  I’ve wanted to celebrate but also don’t want to jinx ourselves.  But we have reason to mildly celebrate as Grace is doing well, side effects are not too bad currently, and we have never see her respond this quickly and sustain the response to a new medication.

Ok so you celebrate for us and we’ll just maintain and see what the next couple weeks bring, then maybe we’ll celebrate.

kevin

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I hope you’ll forgive me that this story isn’t directly about Grace – but it is about her toy choice for her third birthday…..

For her birthday Kevin and I took Grace to Toys R Us to find a toy.  We showed her so many things – and the thing that she loved most was the duck you see here.  Ming Ming is a Wonder Pet –when you press the foot you hear animal noises, wonder pet songs, and Ming Ming say “this is serious.”  He flies (on the wheels on his feet) and his super-cape flies behind him.  Hoover is scared of Ming Ming.  (If you know Hoover this is not a surprise – if you don’t know Hoover – he in actuality is quite delicate…for example he is afraid of balloons).

Anyhow the other night at bedtime -after a hard day of playing with Grace – Ming Ming ended up with his foot under Hoover’s pad.  Around 4 am Hoover adjusted in such a way that he inadvertently set Ming Ming off.  Panic ensued.   Hoover danced around the house with such nervousness. Grace and I watched from the couch – she was up – way too early for her own good….but she and I, we both laughed.   She really did.   Ming MIng was safely removed from Hoover’s area and the story ends there.  Except to tell you that when we leave the house sometimes Hoover likes to sit on the furniture.  We’ve finally found a way to prevent that from happening – we enlist the help of Ming Ming.

A little bit about Purple Day…

Founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada, Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26, people from around the globe are asked to wear purple and spread the word about epilepsy.

Why? Epilepsy affects over 50 million people worldwide. That’s more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined.

Why purple? Lavender is the international color for epilepsy.

Getting involved is easy. Wear purple and encourage others to do the same. And most importantly, get real facts about epilepsy at purpleday.org.