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


Sunday, February 1, 2009

supposed to

So here I am blogging, because I am supposed to. I have been getting all the emails and phone calls that they "need" our blog.

Sometimes, however I can't bring myself to do it.

This week, or past 2 weeks, have been hard.

Again. our angel has been slipping away.
I take his temp. every 5 minutes, thinking it is because he has a fever.
No fever. The seizures every 5-10 minutes and the inability to hold his head up, or eat his food, or walk from a room to another room, are quite discouraging.

I would like to blog better news, but at this moment I can not, as I simply at a loss as to what I cando tohelp my little boy.

I am not afraid of tomorrow, for I have seen yesterday and I love today.--William Allen White
God Bless~ Christine

ps..sorry Sally, as I know yu hate to hear me talk negatively. everythings fine!:-)


Fawn said...

First off, when bad things happen, they do, and saying so isn't being negative. I think a positive attitude is a wonderful thing and important in moving forward, but pretending there are no problems and that your heart isn't heavy doesn't help anyone. You know what, it's the blog posts that were about the worst times that really brought people out because they'd love to do anything to help and support you. It's what makes your blog real. (That's my two cents and I'll shut about that topic now.)

Is Jake still being weaned from a med or taking a new one? Sometimes withdrawal from a drug can temporarily cause more seizures because the body became dependent on it. I'm hoping that's "all" it is and that Jake will start getting better again soon. With all my heart.

Fawn said...

Oops, I just reread my comment, and in that first part I meant that the blog posts I wrote on MY blog that were about the worst times were what brought people out to support me. Just spent a day batch cooking meals for Jade, so I'm a little incoherent. :P

Lisa said...

Hi Christine :) Thanks for visiting my blog! I just spent a few minutes reading through yours and I am so sorry to read about all the epilepsy problems that your little boy is having. I understand what you are going through, feeling like you want to make their world better...to take it all away. But all you can do is be there, and love them, and snuggle them, and let them know that it'll all be OK.

I'll keep your family in my prayers and keep checking back :)
-Lisa (Elisabeth's mom)

Leslie said...

You're not talking negatively..you are venting so that you can take care of your son and get the moral support YOU need. No elephants in the room remember, get it out! Love you!

Julie said...

I am sad- for you, Jake, Addi, Matt- it makes me sad that Addi just wants him to cry so the seizure will be over- it is sad that any child has to be sick, with a cold, epilepsy, cancer, ANY sickness or disease. I just want to live in Dallas so I can see you all the time and help you! I know that is irrational, but still.

The are so many shit%y things going on- something I heard that sticks with me: God is so much greater than our greatest problems.

Just know that we are praying every day, and I love you so so so much!!

PS- No, I have not had a drop of wine tonight either :)

reidster said...
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