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, April 9, 2009

Package, Protective Pig, postitcal and prayers

Yesterday, as the kids and I went to check the mail, the front glass door was propped open by a package.

How fun are packages?!

The kids and I gleefully, bounce back into the house without checking the mail to rip open the surprise that awaits us.

I notice it is from a dear friend from high school. Fortunately we are back in connection with each other and share the most amazing emotional bond right now that I never would have thought was possible. Unfortunately it is seizures that made us reconnect. I have always said God has a plan for this beast he has given us, and I truly believe reconnecting with Joanna and her family is one part in his ultimate plan.

Before I can peer into the box and see what magic awaits, the card falls out so I read that first. I then dive into the box with a face full of tears.

I see the most beautiful plush pig. Jake instantly grabs him, kisses him, and introduces him to "Woody!"

meet Hamlet
I will paraphrase the awesome card that accompanied Hamlet, as I know Joanna would surely hire a hit man to take care of me, if I even remotely quoted her.
Hamlet was Joanna's as a baby.
He is 30 years old.
Joanna gave him to her son when he was born.
Hamlet has accompanied Joanna in many trials, tests, and surgeries in her life. He also was bedside with one of her friends as she underwent Chemo for Hodgkin's disease.
Joanna is tumor and seizure free and her friend is cancer free.
Joanna's son says Hamlet makes him "brave."
He told his mommy that he wanted Hamlet to stay with Jake and make him better.
So we now have dear Hamlet the Protective Pig on loan in hopes that he will make Jake better.

We are on the eve of Jake's surgery.

We were just loaded up in the car to take Addison to soccer practice.
I just buckled Jake in and "IT" happened......

his eyes rolled back
his arms jetted out

his legs shot

his feet turned inward

and the grunting began

I watch and time "it" for a couple minutes without it subsiding.
I decide to unbuckle him, and carry him inside.

I call for Addi to follow me and to bring my purse that I had just loaded with the "butt medicine" to take to practice

3 minutes

4 minutes,

5 minutes

I think "it" is lessening so I decide not to inject the Diastat that I have already prepped.....
6 minutes and we are still not "fully" done.

I am panicking, then, finally it happens, Jake lets out a smaller groan, and is finally responsive to my nails on the arch of his feet.

His is now postitcal, with the pig, next to me, as I type.

Please pray for the surgeons tomorrow. Please pray for our strength, please pray for the success of the VNS (Vegas Nerve Stimulator.)
And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
Romans 5:5

God Bless~ Christine

1 comment:

Brandy said...

no words, just tears and prayers