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


Wednesday, April 15, 2009

Century Club

We have made it to the Century club.

Jake logged 100 or more seizures today.

I got a call from Jake's school, asking "what was going on?"
I replied "you tell me."

I was informed that Jake has had over 80 seizures while at school. Mind you this is a matter of only a few hours.

I immediately leave class to "observe" Jake , so that we can all be on the same page, as to what a "twitch," a "tremor," "tc," and "drunkeness" truly are to each of us.

I was there about 5 minutes and witnessed Jake have multiple seizures.

What the heck?! Especially, because his mind has been soo clear lately. He seizes and then is back where he left off. He remembers many things, talks more clearly and his mind is very obviously more "with it."

So what's with the damned seizures?

The hardest part about this, is that you look to doctors to help. Your trust is 100% in them to help, fix and save your child. As a parent you will do anything, and I mean anything, to keep them from harm, pain, and suffering. I, however, feel like these drugs that are to be helping and fixing our Jake our making him sicker.

Why can't anyone "fix" our precious boy?"

Although it has been 9 months since all of "this" has started, and I NEVER would have imagined us still be "here,"I have faith that it will change.
This is all for a reason.
And I will be a better mother, wife, sister, daughter and person because of it. There are too many people praying for us for that not to happen.

I should have known not to blog good news..this always happens to us when I blog happiness.:-)

Thank God for my mom, and Jake's teachers, nurse and support staff (basically Jake's caregivers). They are so loving, patient and understanding, when all of this is soo hard to understand myself.

"To have faith is to be sure of the things we hope for, to be certain of the things we cannot see. It was by their faith that people of ancient times won God's approval."
Hebrews 11:1-2

God Bless~ Christine


Leslie said...

100 seizures?! Maybe like any other disease you have to hit rock bottom before there is a turn around..this HAS to be rock bottom! He WILL get better because we have Faith that God WIll take care of Jake!

Brandy said...

this is NOT the club you want to be a member of, I'm sure. I am so sorry. I am so mad right now. I know GOD is mighty and can heal this. Faith is so hard sometimes, but HE is good and we have to keep on, keepin' on. There is a purpose. Jeremiah 29:11

For I know the plans for you, declares the Lord. Plans not to harm you, but to prosper you.

LeRoyFam said...

Hey Christine - saw your blog address on your post today (on the doose yahoo group) and thought I'd come check it out. Sorry things are so rough right now. I hate this stupid condition/disesase/whatever the heck you call it. It's so unfair. Your little Jake is such a doll. More prayers coming your way, I showed the pics of Jake to Hewitt and he was so fascinated to see another little boy doing the same things he has. Hang in there and go with your mommy gut.

A verse I have clung to throughout our trial with this is Lamentations 3:17-26

I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The LORD is my portion; therefore I will wait for him." The LORD is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the LORD.

Wish I could do something tangible to help! It WILL get better.
Colleen (Hewitt's mom)