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, June 1, 2010

Time flies...

Where has the time gone since the last post?

We have been wrapping up the end of the school year, celebrating birthdays and anniversaries, splashing in the pool, playing on the sun, celebrating small victories and stumbling amongst minor set backs.

My computer has been on the fritz, so this very much makes working and blogging very difficult.

To sum up the past week, without pictures, as everything is on my computer currently getting "fixed" through my school district, it has been a wild one.

I celebrated my 29th :-) birthday, Matt and I celebrated our 10th anniversary, and we rejoiced in Jake being 2 weeks seizure free.

However, last Thursday, I got "the call."

Jake had a big tc at nap, at school.

My heart sank.  I had been praying soo hard that this "good streak" would continue.  I literally felt like I had been kicked in the gut.

Then, several minutes later, I got another call....Jake had a 102 fever.

I smiled soooo big!! I was so happy!

Why, you ask?  because a high fever could mean that the seizure was a febrile seizure and not the works of the damn beast!

After, skipping gymnastics and running Jake ot the pediatrician, we learned Jake has a sinus infection.
I asked for different antibiotics than he was on a couple weeks ago, as I am certain it was causing seizures and we went on our way.

The fever cleared up and we have been seizure free since then, until today.  He had a small one at nap.  This time, however, no fever...so this is probably the works of the beast.

Also, as we swam, attended the Colonial golf tournament, and simply just observed Jake , we have noticed a trembling in his hands.

This is very frightening, as this is what I so vividly remember his hands doing all the while he was having drops, and jerks.  I fear that they could be coming back!

I refuse to get too worked up, until he finishes his course of antibiotics.  Hopefully when he finishes the meds, the twitching will too vanish.

Hopefully, after this week is over, the school year ends, and I get my computer back, I will be able to share some great pictures and even better news!

Fear ends where faith begins.

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