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, March 9, 2009

pictures, practice, ponytails, planting, parties, and postitcal

Addison had her first soccer game of her season on Saturday. She had not practiced or played with her team yet, because of her illness. Therefore ,I was a little nervous, as to whether she would remember how to play and work together with her team mates. After some team and individual photos for picture day, Addison proved she "still had it." Little Mia Hamm did an amazing job and scored several goals. We were certainly proud of her!

Yesterday, was an amazingly gorgeous day in PLano, Texas. The weather had that new spring smell and it was 80 degrees.

The kids and I went on a walk and then played out in the front yard. Addison practiced riding her bike, sans her training wheels. We have tried to tackle the 2-wheeler before, but have not completely mastered it. Mostly because of lack of dedication by her mommy to get her out there and practice. I think she is well on her way, though, to now being a 2- wheel rider!"

While Addison practiced riding her bike today, Jake practiced some baseball.

After naps we went back outside to join Matt and help him with some planting.

The kids posed for some pictures.

and more planting

After spending some beautiful quality family time out front, Addison and I left for a birthday party at a gymnastics center. The same gymnastics center that is a HUGE sponser for the stroll for Epilepsy. They even actually have a big silent auction set up for the stroll. The same gymnastics center that we were headed to last fall for a birthday party and Jake had a tc, causing him to miss the shindig.

This time, however, Addison and I head out by our selves. Jake and Daddy were left at home to work on the pool, and finish the yard.

I had just finished examining the auction table at the gym, when the phone rang.

Matt never calls.

I answer, as I am holding a "Stroll for Epilepsy" brochure in my hand and hear the darned words:

"Jake had a big one...."

I ask how long and was informed it was about 5 minutes, but no Diastat, butt medicine, was given.

Jake's postical this time was almost 2 hours. If you remember from older posts, his other postitcals are usually 15 minutes.
I have learned my lesson, never to blog "the good news!"

After I wrote the" 48 hour seizure free" blog last Friday, I called my mom.

I inquired how he was doing and she said he had had two that morning......as I was blogging.

Over all this weekend he probably had 4-5 drops and "The big one!"

We will try to keep our heads up, it just gets depressing sometimes, when we think it is going so well, we have a set back like this. All in all, though, looking back to where we have come from, it can only get better....right?

When you get to the place where you would worry,
Stop and pray.

-Edgar Cayce

God Bless~ Christine

1 comment:

Julie said...

Just a little blip hopefully. Ugh, so close. At least an improvement overall. Still praying every day- I know you hear it over and over, but you are so strong, and an inspiration to us all lady.