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


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Tuesday, March 31, 2009

we are Quackish

The good news, hmmm...maybe, is that we see the nuero Thursday. But not until we have a sleep deprived eeg. A sleep deprived eeg means Jake should stay up until 11 tomorrow night, he usually sacks it out at 7:00, and he needs to wake around 4:00 am and not nap until the eeg. This for a kid who at 9:00am is usually begging to be rocked for a nap.

This could be a challenging 48 hours.

However, I am hopeful we can get answers or treatments at the Thursday appt.

I am ready to get rid of these drugs.

Geesh, he is on so many drugs and they are not helping anyway...what's the problem with pulling them...we will have seizures either way.

Please pray for good news or at least hopeful news Thursday!

Through him you believe in God, who raised him from the dead and glorified him, and so your faith and hope are in God.
1 Peters 1:21

God Bless~ Christine

4 comments:

Dana said...

I hope all goes well the next few days and the testing shows what it needs to show for the neurologist to make the best decisions for where to go next for Jake. Don't think of yourself as "quackish"! I only hope that I could be half as strong as you going through all of this and would hope that I could seek out anything to help out my child! I'll be thinking of you!

Fawn said...

Good luck, hon.

Julie said...

We will be thinking of you during your app't, and praying that God gives the neuro the wisdom to know what treatment will help Jake. Love you!

reidster said...

We are praying for Jake's healing and your wisdom and discernment. -Reid