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Haley Is My Hero

"A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles." 
 ~ Christopher Reeves

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IN THE NEWS!!!

Posted by haleyismyhero on February 24, 2014 at 10:10 AM Comments comments (0)



Our fight for medical cannabis made the local news out of Norfolk, VA.  The title was not exactly what we would have wanted, and the visuals seem to elicit a "Cheech and Chong" stereotype...but news is news and it started a conversation.  I did write the reporter and said I wish they emphasized that Haley would NOT smoke this and it would NOT get her high.  I sent along this photo of Charlotte'...

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13th Anniversary

Posted by haleyismyhero on January 29, 2014 at 2:35 PM Comments comments (0)

Haley decided to start her "anniversary" off with a BANG!  Fourteen seizures this morning.  She had extra medication before bed and two magnet swipes on her VNS to help her get through the night.  Starting at almost 1:00AM she began to seize.  The seizures lasted between 30 seconds to 3 minutes.  Bobby gave her Diastat (20mg) after she experienced five seizures around 5:00AM. She had five more...

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2013 Was a BLUR....of Seizures

Posted by haleyismyhero on January 29, 2014 at 8:35 AM Comments comments (0)

Here I am on the 13th anniversary of Haley's first seizure and looking back not only over the 13 years, but the last year. 2013 by far was the worst seizure control we have experienced with Haley. The difficulties were further compounded by difficulties with the VNS and then a host of school issues.

The year started off with four hospitalizations in two months. All hospitalizations required an ambulance ride from our local hospital to VCU/MCV in Richmond. Haley loved that, even thou...

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VNS Surgery

Posted by haleyismyhero on June 16, 2013 at 4:00 PM Comments comments (0)

Although we have known about the Vagus Nerve Stimulator since Haley was about five-years-old, we delayed trying it.  Partly because our neurologist is considered the "pharmacological guru of pediatric epilepsy" and partly because we always looked at it as a "last resort or last line of defense".  The decision to go forward with the decision w...

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Thank you Obamacare!

Posted by haleyismyhero on May 7, 2013 at 7:55 AM Comments comments (0)

Thank you Obamacare! The "Affordable Healthcare Act" has now made seeing Haley's Pediatric Neurologist/Epileptologist harder to get an appointment, more expensive, AND less convenient. After 25 years of using a satellite office in the Child Development Resource Center in Williamsburg, Haley's doctor will no longer be able to see patients closer to their homes or allow patients easier to access his very busy schedule. Why??? ...

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Shiny Teeth

Posted by haleyismyhero on February 29, 2012 at 7:20 AM Comments comments (1)

When Daddy arrive home yesterday Ha...

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Dravet Mommy Doctor

Posted by haleyismyhero on February 20, 2012 at 5:10 PM Comments comments (0)

Prior to Haley's birth, my medical experiences were limited. My family was military and I have only have a handful of memories of going to the doctor. Two of those involved stitches about a decade apart, and beyond severe cases of poison ivy, I rarely went to the doctor. However, with Miss Haley and then her brothers in my life, I am finding I am reluctantly persuing a "Mommy Medical Degree".


Of course it all started with Haley's uneventful birth and successive pediatrici...

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Back to "toothless"??

Posted by haleyismyhero on February 6, 2012 at 8:30 PM Comments comments (0)

Wednesday morning was a very busy one...a seizure at 3:30 AM, another at 4:45 AM, went to the YMCA at 5:30 AM, ran over six miles, and then the phone call from my husband, Bobby at 6:25AM.  Haley had fallen and might need a stitch in her lip.  I went directly home and looked at Haley's lip.  In lifting up her swollen, bloody lip, I discovered that there was no left front permanent tooth any more.  It had either been...

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Eleven years of seizures

Posted by haleyismyhero on January 29, 2012 at 7:20 PM Comments comments (1)

January 29th is a day that will forever live on in our lives as the day that things changed.  At the time we had no idea.  Eleven years ago today my husband and I along with Haley had spent the greater part of the day shopping at Home Depot.  We were looking for lighting fixtures for the house we were remodeling and would soon to move into.  We got home late in the day and I was preparing dinner and Bobby had Haley lying on his chest wearing her pink Osh Kosh overall with ...

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2011~A Year in Review

Posted by Haley's mom on January 20, 2012 at 8:30 AM Comments comments (0)

One of my New Year’s resolutions was to keep Haley’s website more current. It was probably one of my resolutions from last year as well. I was sitting down to recap the year and then the thought was to show it in pictures. I don’t know about you, but 2011 flew by. I am not sure...

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