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


Thursday, August 6, 2009

August 5, 2008

Matt scooted off early to work.
I woke with Jake by my side.

We talked to each other for a bit.

I then put on some show on Disney and went to go get ready.

We were taking muffins and cookies to the fire stations that had helped Jake.

As I was washing my face, I heard it.
The huge gasp!
I ran into the bedroom and saw, Jake seizing again.
The neurologist sent us home with no emergency medicine, so there was nothing i could do except hold him and talk to him.

After about 4 minutes I called the nuero's office and asked what I should do. Should I bring him in to them or call 911.

They told me I could make an appt., they didn't know what to do.

Hello?!!! my son is seizing now!! What do I do?!

After a couple more minutes waiting for answers, I hung up with them and my mother in law and I decided to call 911.

the minutes ticked by, 7 minutes, 8 minutes, 9 minutes.

I believe the paramedics made it to the house at minute 11 and Jake was still seizing. However, I quit counting.

He was still seizing as we loaded him in the ambulance.
We rode to another hospital and prayed they would find anything to answer the question, as to why he is seizing so much.

They did spinal tap, which turned out negative, and decided he needs to be checked in again.

After several calls to our pediatrician, and our neurologist.
After waiting hours for the neurologist to show up, Matt and ,along with friends, and even my dr. (ob/gyn) made the difficult decision to transfer Jake to Dallas Children's. (our , so called, nuerologist never did show)

Leaving, yet another hospital, still with no answers.

Jake with Tracey eating Rosie's yummy cookies!

God Bless~ Christine


Brandy said...

As I am reading these flashbacks, I am realizing how frustrated you really were...no answers, nobody HELPING you. You never spoke unintelligently of anything, you were so calm and collected and in full super-mom mode. You are so great, Christine. You didn't know what was going on, you didn't know what a seizure was, why it happened, when too long of a seizure was too long, or what any of it meant and I just can't believe how far you all have come. Man, it is just astonishing and I am so glad that the "newness and unknown" is somewhat over and that you get to battle this with the great neuro's, doctors and nurses that have been helping Jake and with your knowledge of what you have learned. It is so comforting to know that CCH knows what they are doing. I am so thankful for that. I am rambling...Love you!

Julie said...

Remember this day like it was yesterday- cannot believe it has been a year.