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


Tuesday, January 27, 2009

Darn it!

We got the kids off to bed last night with huge smiles on our faces. Our Jake, appears to be getting better! yeah!

I hop into bed at about 9:30 last night. By 10:30 I am startled by a blonde haired, blue eyed boy, staring me in the face. If and when Jake crawls into bed with us, it is usually in the early morning hours, so for it to be so early, I thought this was strange. As I was freezing and didn't want to walk the path on the cold floor back to his room, I lifted him up so he could snuggle right in between Matt and me.

At 11:08 it happened.

I am unsure why I bolted out of bed and turned to find Jake, but thankfully I did. Only to find him having a tc.

Darn it!

I forgot how miserable these are to watch.

When it finally clicked what was happening I wake Matt and have him get the "butt medicine."

I think I was in shock. I remember doing nothing except crying and staring at my baby boy, as his eyes deviated up and the the left, his body was convulsing and limp, and he was unresponsive.

I should have turned him on his side. I should have done something. However I was numb.

To think just a couple hours before I was bragging to anyone who would listen how great he was doing. Now I am like a deer in headlights, acting like this was his first time to have a seizure.

This was not his first seizure and I can only dream it will be the last. All we can do is keep the hope and faith that things will continue to improve.

"Sorrow looks back... Worry looks around... But, faith looks up."

God Bless~Christine

1 comment:

Fawn said...

Oh, I'm so sorry to read this Christine. I can't even tell you how sorry.