Haley Is My Hero

"A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles."
~ Christopher Reeves
Blog
Blog
Blog
IN THE NEWS!!!
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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 i...
Read Full Post »13th Anniversary
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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 s...
Read Full Post »2013 Was a BLUR....of Seizures
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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...
Read Full Post »VNS Surgery
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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 defen...
Read Full Post »Thank you Obamacare!
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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 home...
Read Full Post »Shiny Teeth
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When Daddy arrive home yesterday Ha...
Read Full Post »Dravet Mommy Doctor
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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...
Read Full Post »Back to "toothless"??
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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 ...
Read Full Post »Eleven years of seizures
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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 ...
Read Full Post »2011~A Year in Review
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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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