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, May 11, 2009

Honeymoon's over?

Well, I have hated to even say anything, as every time I do.....seizures happen
We had an awesome Mother's Day yesterday! Absolutely Amazing!
We actually did work, and alot of it, but also relaxed, swam, and cooked chili-dogs for dinner
Jake hasn't worn his helmet for 6 days!

Jake rode a bike for the first time since August!

Jake has not fallen from a seizure
Jake went swimming!


Until this morning, Jake has not had a seizure, a twitch, a weird jerk, or slurred speech, since last Wednesday!
Matt and I are very superstitious, so we had not spoken of this glorious news, until last night, poolside, babies tucked in, finally daddy in town, and able to sit with mommy by the pool, in the yard that he has worked so hard to transform.


We finally talked of the greatness that has been the past 6 days.
We checked in to bed.
Then IT happened.
Matt and I heard a loud crash. To me it sounded like thin glass shattering.
I didn't have time to think, just react.
I ran to check on Addison...she was fine..then Jake...he was gone!
I ran and told Matt he is gone, he went for the pool. Jake has slept walked, since he started walking at 9 months old. Most of the times we would find him looking out the back window, at the pool, asking to go outside, while dead asleep.
I was certain this happened again, except this time, Jake had broken the window and had made his way outside
UNTIL.....Matt reminded me Jake had crawled in bed with us 6 hours ago..and he was still as snug as a bug in our bed...OOPS.:-)

So this was 3:00 am...Jake heard us awake and never went back to sleep..he wanted macaroni and cheese, to watch Scooby, and to go swimming, but he was safe with us.
His being awake I think is the cause, that broke our 5 day cycle....he had 3 TC's this morning.
I guess the Honeymoon is over, however I pray that this is just a layover or flight delay, before we get back on our way.
That sucks! truly sucks!
However..he had no more seizures all day long! YEAH!
Besides being a swollen, bloated, hungry boy, the kid is doing awesome.

Therefore I have had the BEST Mother's day ever!
Again, I pray for many more miraculous days like this again.
I believe it is because of the power of prayer from the people that love us and read this blog, that we are blessed with weeks, like this past week.
Epilepsy can be a beast. However, we feel like kicking some ass..and this beast will not get the chance to hang out much longer!
There the angel of the LORD appeared to him in flames of fire from within a bush. Moses saw that though the bush was on fire it did not burn
Exodus 3:2
God Bless~ Christine
(By the way the LOUD crashing, noise, that we thought certainly was an intruder robbing us of our children, was the shower clip that holds loofahs and razors.:-))
Here are some pictures of the twerps enjoying the day in the pool

video

video

1 comment:

Jodi said...

I am so happy you had a wonderful Mother's Day! I pray for Jake on a regular basis. You are such a wonderful mom, it shows through the way you handle all the situations the Lord has thrown at you! I hope everyday is like Sunday was for you!!!