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


Monday, April 27, 2009

Pictures, practice and parties

Wow, this past week has seemed like 2-3 weeks.

I can't believe we actually stayed in the hospital for 6 days!

I "checked in" for what I was thinking going to be a day or two....6 days later we emerge into sunlight.

What a transforming week.
We were admitted to the hospital per doctors orders, as Jake was seizing 100-200 times a day.

Most of Jake's seizures looked like this:

http://www.epilepsyoutreach.org/# (click on watch Emmet's story)

He was seizing more than he wasn't.
Jake was admitted to the EMU (Epilepsy Monitoring Unit at Cook Children's). He entered with one dear girlfriend, a emu eeg tech, and left with many! He fell in love with many pretty nurses and even admitted to them "I can have more than one girlfriend." He had a couple male nurse s who he later named stuffed animals after.

(First day after connecting the "leads" for monitoring)

One morning Jake awoke and the first thing out of his precious mouth was, "When do I get to be a doctor?"

Jake amazed everyone at the hospital during is stay, as he knew all the technical names for the procedures he had done, informed nurses what to do, and watched with excitement as he was poked and given MANY iv's. The day before he even assured his aunt, "It's ok if you give me the medicine in my booty." (the dr. advised us to give him the Diastat as Jake was having "cluster seizures" and we needed those to stop in hopes to prevent brain damage.

Jake had many visitors, one being Uncle Mike!

After several days of seizing, the doctor, finally agreed to let Jake "free" from the monitoring, and the "leads" were taken off.

Aunt Tiffany agreed to take Jake outside and see the sun! The patient refused to sit in his wagon, but rather pull it behind him.

Jake loved the feel of the water, soft, and slow falling from the fountains at the prayer garden.
He told me he wanted to sit and" feel the sun(Jake's words)", after days in a cold, damp, dark hospital room.

He made a bird's nest on Earth Day.

and was even visited by therapy dogs

We left the hospital after having 2 AMAZING seizure free, clear thinking days and headed back home. Jake rested a few hours at the house and then hit the much anticipated TBall practice!

The weekend brought his own birthday party!

His first view from his new clubhouse!

Jake driving away "leaving seizures behind!" (notice the helmet in the bed of the truck)

Although we had a couple really good days upon leaving the hospital, Saturday was pretty scary. By 10:00am, Jake had already logged over 70 seizures. He was only up 3 hours at this time. I finally, at 11:00, made the call to the nuero on call to seek advice. He recommended a minor med change. Apparently this minor change has worked wonders.
Jake had an awesome day yesterday and today at school.
Today's seizure log, that I am given every day upon picking Jake up in car pool, read "GREAT DAY!"
Do you even realize the last time I read such wonderful, amazing, and encouraging words!?
Besides the fact , his seizure activity was obsolete, Jake was kind, loving, and his personality was back at school.

No one at school, I believe, has seen Jake's TRUE personality. The boy the Matt, Addison, and I knew and loved. The drug free Jake. The side effect free child. The boy who doesn't appear to have major special needs.

Our son was back, at least for today!

I praise God for today and pray for many more like this!

Thank you to everyone for your thoughts, prayers, support, and patience.

"The Lord is gracious and full of compassion, slow to anger and great in mercy. The Lord is good to all, and His tender mercies are over all His works." (Psalm 145:8)
God Bless~ Christine


Fawn said...

Oh, that's marvelous, Christine! Jade's just had 10 consecutive seizure-free days, so I pray that she and Jake are BOTH starting a new normal.


Anonymous said...

YEAH!!!! YEAH!!! That is all i am going to say. What a praise! Hope Jake had a wonderful birthday! Love ya
Julie Pool