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, January 8, 2009

Jett Travolta

I don't mean this negatively, so please no one take it this way. But more in a positive note, as I have accepted this demon, we call epilepsy, that has taken over our son.

If anything can come of the unexpected death of Jett, and unfortunately, it probably could have come earlier, maybe the world can come to see what we deal with every day.

I truly feel like Jake was given this to make more people aware and I ask myself every minute it seems, what can we do to help the cause?

Maybe this is what we, as an epilepsy community, need.

A big celebrity, who is/was battling seizures, to bring awareness to the cause.

We all know the stats. Money is/has not been provided for research and awareness. However seizure disorders and epilepsy affect 2,700,000 people in the
U. S. and 50,000,000 worldwide.

I am a special education teacher and educate kids who suffer from seizures, but never "really" knew, until it happened to me.

Maybe this is/was his ( J. Travolta's) calling?!

I hate this happened to his family and I am surely not going to criticize their choices in treatment. They lost a loved one, and could very well be beating themselves up for what they could or should've done.

But, this is bringing an awful lot awareness to autism, epilepsy, seizure disorders and other disabilities... .maybe that is /was their (the Travolta family's) cause.

"Sorrow looks back... Worry looks around... But, faith looks up."

God Bless~ Christine

1 comment:

Leslie said...

I hadn't said anything about the Travolta incident, as I imagined that is your worst nightmare- Jake falling like that. You obviously have been thinking about it a lot. I guess we should just always address "the elephant in the room"..better to have it out there than worry about what someone else is thinking.

And we are here to help you raise that awareness and the money for research!