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


Wednesday, April 22, 2009

Nada, zip, nilch

Here we are a week before Jake's birthday and I have nothing planned!
Nada, zip, nilch
My sister in law and I had planned a big party with bounce house, cake, water guns , the works for this weekend ,as her twins, my niece and nephew, Jake's cousins, are a year to the day older than Jake.
However, I kind of backed out on that a couple weeks ago , as Jake's seizures started getting worse.
Besides the fact, Jake would be in a constant seizure, my stress level would be through the roof trying to chase him around the backyard, keeping him away from the pool and off the concrete.
Jake is not able to climb.

The fun at the party includes, jungle gyms, forts, and a bounce house you climb and slide down.

Jake has increased seizures when over heated.

The party was to take place at 3:00 in the afternoon with an expected high of 90.

Jake's seizures are also associated with sleep of lack of sleep.

3:00 is when he usually sacks out for his second nap.

So now I am left with a birthday boy, who has been locked in a hospital for a week, and no plans for his party.

Suggestions are welcome for this awful mommy who has had no time to think about how to make this day extra special for her little boy.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

Jeremiah 29:11

God Bless~ Christine

P.S. in all of this I always have said "It's worse for us than it is Jake, He thinks he has always been like this." This morning upon waking he states to me "I climbed at Disney World, I am going to tell that doctor I can climb!"
We went to Disney World slightly over a year ago and apparently Jake does remember not having the restrictions he has now. As heartbreaking as this statement was, it was also soo encouraging that he does remember and that his level of cognitive thinking is still there!


reidster said...

Doing your best to protect Jake from seizures and their inevitable injury risk is a great birthday gift. Not all birthdays will be constrained like this. We've found that Playmobil toys are good for little boys confined to a bed or couch. It provides a good imaginative manipulative toy for them to play with. God bless!

lisa a said...

Darn you make me cry! I'm still hopeful that we can have a nice dinner and blow out some candles. It's has been heartbreaking this week getting it ready without having Jakers involved. And don't forget you are the best mom ever the way you fight for your child and the way you touch and inspire others! Jake is blessed that you are his mommy!