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, October 19, 2011


I am so embarrassed, guilty and dissatisfied with myself!  seriously has it been since May that I have last posted?

May?? uggh hate that i have let it get that long.  I keep saying..every day since the last post...."
I will post tomorrow."  obviously that has not happened.

When  I came and looked at the blog tonight I  now know why it has been so long.  I have mostly written about hard, bad times.  That was easy for me.  It was my release.

I know it's cliche, but I truly believe no one can truly understand.  probably most of my Doose mommas,and my cook epilepsy mommas, but no one can truly understand what hundreds of seizures a day really feels like.  The trips to the er, the not knowing when another one will come, the feeling guilty for having to ask any someone to help with another Dr. visit, er outing, or car pool.  Thge anxiety it has created is like no other.

So those were the hard, bad times, right?   Now, looking at this page, hearing the music, it takes me back.  I have avoided it on purpose. I often wonder who I was before it  all .  What i used to be like?  Did I worry 24/7, not sleep at night, like I do now? Was I a nervous nelly?  Did I stress and over think every little moment of the day?  Did I every let loose and relax, as I can't seem to do now? 

Jake's doing well.  he's doing VERY well.  and quite frankly i don't want to jinx it by writing about it. He is doing great, so great, even writing the words brings tears to my eyes. 

Jake has made great friends here and his kindergarten class is amazing (he is repeating kinder).  he is reading sight words, getting along with peer age friends, and even throwing temper tantrums :) He still VERY much struggles with writing and some social issues, but he has made great gains, since......

his last seizure on Thanksgiving Day 2010!!

so we will travel to Cook Children's in November for an EEG.  If the EEg looks good, Jake will start a med wean.

Crap...talk about worry!!! i am so very excited at the thought of one less drug, but of all the drugs, approx 10, he has tried I know Depakote had worked for him.  so Depakote would be the first wean.  the reasoning is because Dr., H believes, as do I, depajkote is the reason behind his constant tremoring hands, severe adhd, and lack of focus.  

If that wean goes ok, assuming eeg is clear, we will then go back to cook Childrensfor another eeg and another wean.

I ,honestly, i have not been myself in 3 years in regards to anxiety...just waiting, not sleeping, watching baby monitors, making sure he isn't too hot, too tired, too hungry.  I can only imagine it is going to be a million times worse in months to come.

Rather, I hope hope it becomes worse, as that means his eeg is looking good and we are detoxing our baby of these drugs!   I Will just need more drugs.:)

 Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?" Matthew 6:25-27


J Hickman said...

Wow! I Honestly remember you being a laid back, easy going mom before all this started. I remember Addi swinging from the chandelier, and it was all good!! I hope that eventually after all this you can return to that person. Not exactly anxiety-free, as that doesn't exist, but just beast-free. Major prayers for November.

Brandy said...

I'm overcome with emotion...I'll have to write back in a minute. gosh!

Crazy Family said...

I know all too well that crap! feeling when you think about weaning those seizure meds... I hope the past month has gone well:) Praying for you guys, especially you, since I do believe that no one worries or knows worry like a mama does!

Ben said...

i just found your blog and I'm struck by the similarities. How is Jake? Is he sf? My Ben is almost 5 and was just diagnosed with Doose this summer. It's been a long road and we just started the Keto diet a few weeks ago. Are you guys on the diet? Thank you for your blog - keep updating the good stuff - it gives the rest of us courage and hope for the future!