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, September 18, 2012

They're back!

I can not find the words tonight, and have not for a long time, hence the no posting.

I am already feeling a "sigh of relief" just starting this post, though.  The venting "out loud" is a great therapy!:-)

Long story short.....back in June i suspected Jake was having seizures again.  My suspucions started on the top of a water slide @ our gym.  Jake and i were taunting each other about the race we were about to have.  suddenly, but slowly he was gone.  His eyes rolled back, and he was gone.  it was only for a matter of seconds, but i knew "that look."
  I immediately raced Jake down that slide and called Brandy in tears.  We both kinda blew it off, but deep down I think we both knew a mommas heart never lies.  She and I both knew...

I kind of watched , or stared , or obsessed over him the beginning of the summer.  my gut told me something wasn't right.  His behavior started getting very erratic, his adhd was out of control, his emotions (which he has never shown), were heartbreaking.

Finally one morning, as he and I drank coffee and watched scooby doo , the only ones awake, on a beautiful summer dawn, i saw it.  Not only did i see it, he definitely felt it.  he told me he was hot, his head hurt and he felt "irritated."  the next thing i knew our boy was gone....the look on his face was the look i had seen too many times before.  i could see in his eyes him asking for my help.  he was pleading to me to unleash the beast. 

I sat, I could not do anything.  I was lost.

how the hell is this happening again?

I called the dr. 

He didn't believe me.  We got an egg in early June it showed nothing, except crazy mother syndrome.

long story short...it kept happening, I finally caught a good one on video, we went for 2 more eegs, and low and behold Jake is having seizures.


so we are back at adding meds, adjusting meds and having a 7 year old sleep with us.

seizures suck!

video

8 comments:

Anonymous said...

Heart breaking! So sorry ;(
love, heather

Kathy said...

Dangit! There are no words. Love you

Fawn said...

I know that look. :( Seizures suck is putting it mildly. I'm so sorry, Christine.

Jamie Campbell said...

:( I am so sorry. That's all I can say. Hope you get some relief soon.

xoxo

Ben said...

I'm so sad for all of you...praying for another miracle. Did they give you an clue as to what or why? I hate hearing about kids who have done so well and then it all falls apart again...just heartbreaking!

Ben said...

just wondering how things are going for you now...we are continuing to pray...

Colleen @ six said...

This. Makes me cry. I'm so sorry and thanks for posting the video. It helps me know what to look for with Hewitt. Any update?

Ben said...

How are things going now? I would love to read an update. Still praying for your family.