J a k e

J a k e
at the beach in Destin

Jake's story

July 21st was a normal day, as were the days of summer before. Everything was in it's place. School days were approaching and the family was enjoying the last days by the pool, ignored bedtimes and high popsicle counts.

Then July 22, 2008 came....

Jake had his first seizure. I did not recognize it as such. It was not until he had several more of these "little jerks" and bloody noses that I thought this could be seizure activity. We were scheduled to see a neurologist on August 4th, after going through our pediatrician, however we didn't make it that far. I was awakened August 1st, by Jake in a full seizure (6 minutes long)...he started to turn blue so I called 911....

Here begins our journey......

...we were taken by ambulance to the hospital. Checked in. Released. 3 more grand mal seizures after being released. Checked back in. Sent home 3 days later. Another grand mal, this one lasting a whopping 11 minutes and taken by ambulance again. Stayed at Childrens Dallas for a week. Upping meds, changing meds and mixing meds.
Diagnosis: Epilepsy
Cause: Unknown
We have now found, through some absolutely amazing family and extended family, whom I will NEVER be able to thank enough, the wonderful doctors and nurses at Cook Childrens Hospital in Fort Worth, who are continuing to help us through this. We have had another grand last thursday, and are averaging anywhere from 5-30 seizures (jerks, drops, stares) a day. I was to begin back teaching at Apollo, but am having to put that on hold until the seizures are controlled. Jake is not able to go back to school until he is 30 days seizure free. We are still waiting for that ONE day. Please pray for our family and for little Jake. Although this is not the end of the world, it is a huge hurdle we WILL overcome. Pray for courage for Jake, understanding as parents, good doctors and for the right medicines.

Jake's mom, Christine


Thursday, November 11, 2010

Epilepsy awareness month!

Welcome November! Although, you have already come on in with a whirlwind and are blowing through much quicker than I appreciate, I do love you.  I love the feel of Fall in the air.  The excitement as the school year is underway, the thoughts of Christmas right around the corner.  And the past couple of years, I love the opportunity to make people aware, as November is Epilepsy awareness month!

Never before have I cared or thought about the color purple.  I  even quite hated it.  I cringed as Addison would beg for purple shirts, shoes and clothes.  It had become her favorite color just before the damn beast made an appearance.  Foreshadowing? symbolism? maybe.....

Now I can't find enough purple to throw in my closet.  I even get my nails painted shades of purple.  Today, Veteran's day, I even resorted to literally running down another mom at the boy's school, as she was wearing a ribbon.  I thought the deep blue color was actually purple.  I stalked her throughout the halls and told her Jake's story, thinking she would have one to share as well....until I learned her "purple" ribbon was actually a blue one honoring the veterans.

I have found I love this month, as I have an excuse to tell stories of Epilepsy, share the facts, the horror's, the unknown and the misinterpreted.

I have said it before and will say it again...Jake was "given" this for a reason.  Right now I believe the reason is to educate and inform.  I know his case has already had a huge impact on many.  This is obvious , by the size of team "All 4 Jake" at the stroll.  One of my bestie's , Brandy, has also taken an amazing interest in the cause.  You know that she turned a buiding purple, but also has become a mentor for the Epilepsy foundation in Florida, and now is even organizing a stroll in St. Petersburg.  Starting from scratch, organizing a city wide stroll for epilepsy.....man that's mind blowing.  I don't know if that would have ever happened had we not almost lost our little boy to epilepsy.

Did you know?:

For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.

Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.

It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.

The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal.

In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.

Epilepsy in America is as common as breast cancer, and takes as many lives.
public and private funding for research lag far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer's and $280 for multiple sclerosis)
These are just some of the facts I never knew about the disease "that's easily cured with a simple pill."
Today and everyday, we currently deal, not only with the lingering seizures, but almost more annoyingly the learning difficulties , ADHD, loss of motor skills and never ending anxiety caused by  the 100's of seizures a day for months on end that Jake has endured.  I was led to believe once the seizures wee gone or even improved..POOF...life is normal again...far from.
Although, I can swear up and down Epilepsy sucks, if Jake was given it to further educate one of you, I will take it.....if we have to.:-)
Become aware...It's not what you think.
When I hear somebody sigh, "Life is hard," I am always tempted to ask, "Compared to what?"

- Sydney J. Harris


Fawn said...

"Epilepsy: it's not what you think." Maybe not a slogan for a national organization, but I think I'll have to use it in a future post -- that really hits the nail on the head for me. Thanks for all your hard work educating people about the Beast!

Julie said...

I have learned so much from Jake. I remember in it like yesterday when I was at a track meet in junior high, and one of the runners had a grand mal after her race. I had no idea what was gong on, and it was very scary.

Thank you to my Jake for making me become aware of the beast. I don't know first hand what you go through, but I do know it has touched my life. Love you!