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


Tuesday, April 20, 2010

Pooper Scooper!

Pooper scooper= me cussing

Jake had been having a great seizure free run!  I think it had been about 3-4 days without any seizures.  That is our longest stint in a while.

However, last night/early morning, this was shattered.  For what ever reason from between 3 am and 6 am he had 6 tc's.  They were little and under 10 seconds long, but still, that seems like a pretty big cluster.  So I finally just woke him up, so this dreadful sequence would halt.

I feel like "something"  must have changed last night to make the beast come out and play.  Was it something he ate?  that he drank?  was he too tired? growing spurt?   Did I give his meds at a different time?

 Who knows.... it gets exhausting analyzing and over analyzing every little things that child does.

I feel like I am living in  constant "clench mode."

Hopefully the days to come will be much better!

The greater the obstacle,

the more glory in overcoming it.
~ Moliere ~

No comments: