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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Thursday, October 30, 2008

Well we had another tc yesterday.

I took the kids on a walk to my sister in laws house, about a mile away, to show off their 2nd Halloween costumes. We all chatted outside for awhile, the kids ran, and apparently had ripped into the candy already. I joked with my niece "hey quit giving seizure boy all that sugar that's the last thing he needs." We make plans to walk back home, get our pumpkins and return for dinner and a pumpkin carving party. We walk to the end of the block and Addison shouts over the tunes playing on my IPod "Mom, look at Jake!" I say "yes, Addi, I know," as she always informs of any strange look that Jake may give in an effort to warn me of a seizure. Thankfully, I did take a closer look.

Jake was having a full seizure and was unresponsive. I quickly snatch him out of the double jogger and put him in the grass, I start taking off shoes, and clothes. I actually don't know why I am stripping the kid and why I moved him to the grass. At this moment a caring teenager on a bike was stopping and trying to help. He kept insisting to let him do something. What? I am unsure. I moved him along, as if to say "move along folks, nothing to see here." I am still very impressed with this young man. To see a stranger on the street and her son in full convulsions and offer to help was very admirable to me.

Apparently somewhere during all this I called my sister in law, and about the time the seizure was dissipating, The Alvarez van pulls up and kids and my sister in law start pouring out. She's handing me diastat, that luckily we don't need , as the seizure stopped somewhere in between the 2-3 minute mark. I don't know if I have ever been so thankful to get a ride home.

Tomorrow's Halloween and it could bring the scariest one yet.

I am so scared as to what the excitement of the day and evening may bring to a boy who suffers from seizures. The day will be filled with much over excitement causing:
exhaustion= trigger
too much sugar= trigger
flashing lights or strobe lights= trigger

and all at the same time!

I am praying that we will have a very UN eventful seizure day and the kids can enjoy it the way all kids should, sans stress, anxiety, and seizures.

We start the day bright and early with a Halloween party at their school. They will be wearing costumes number 2 to the school; Princess Jasmine and Peter Pan. Then will head out early for trick-or-treating, as a cheerleader and football player, in an attempt to avoid at least some of the over stimulation, and crowds on the streets of Plano.

Wish us luck as we try to conquer a very frightful Halloween, that is, trying to stay seizure free.

God Bless~ Christine

2 comments:

Lisa A said...

Oh tears! The Alvarez van will always be at your service!

Brandy said...

Hope you guys have a WONDERFUL day and thank GOD for Lisa!! You have a great support system...wish I was closer. xoxoxo

brandy