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Haley's video story and other thoughts

Posted by Haley's mom on November 21, 2009 at 10:01 PM Comments comments (0)

As I see so often posted in blogs...wow, it has been awhile since I last wrote...  Time flies when you are having "fun".  Well, not really that much fun, but life is happening and there is little time to write.  So much has happened since my last post, let me catch you all up to date.

 

Haley's Dravet Story Video:

I had my first try at making a video of Haley's Dravet story.  It was a bittersweet experience.  I think it w...

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Just an update on drugs....

Posted by Haley's mom on September 24, 2009 at 10:20 PM Comments comments (1)

Where does time go? I have meant to write to let you all know how things are going with Haley and our family. Thanks to all of you that have inquired. I will try to update more regularly in the future.

The last time I wrote Haley had just started Banzel. Initially it was wonderful for her. We saw noticeable decreases in the generalized tonic-clonic seizures (grand mal), but we also saw an appearance of some complex partials, myoclonics and drops. Every medication has it tradeoffs. We ma...

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Another new drug...

Posted by haleyismyhero on February 27, 2009 at 10:37 PM Comments comments (2)

Haley started a new medication last week.  The new addition brings her pharmaceutical “cocktail” up to a four drug mixture.  Haley has been on over a dozen different medications and combinations of medications since she was two years old.  None of which have controlled her se...

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Haley's "New Feet"

Posted by haleyismyhero on January 6, 2009 at 5:09 PM Comments comments (3)

One of the co-morbid conditions that come along with Dravet syndrome seems to be flat feet with ankle pronation (ankles turning inward).   Up until last year Haley did not have too much trouble with her walking, but in the spring of 2008 we noticed that her ank...

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Thank you David Nova, Edie Jett & Team Marlin Maniac

Posted by haleyismyhero on December 16, 2008 at 9:31 PM Comments comments (0)

We had an awesome weekend in Virginia Beach!  We were invited by David Nova to attend the American Striper Association's (ASA) final tournament and 2008 Awards Ceremony.  We in turn invited representatives from the IDEA League since David said he would like to present a check to them.  Thank you Laura Cossolotto, IDEA League president, and Kim Skriba, IDEA league Board Member, for joining us!!  ...

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December 2008

Posted by haleyismyhero on December 8, 2008 at 11:53 PM Comments comments (2)

"How are your kids doing?"  Is a question I hear almost daily.  I know some hesitate to ask because they do not want to hear bad news about Haley.  The question is a difficult one to answer on a daily basis.  One day can be terrific for Haley.  She can do well at school, want to eat, be full of laughter and very agreeable.  The next day could be a different story, three seizures before waking up.  Valium administered....then we have a walking zombie...someti...

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