Friday, August 26, 2016

A three year long overdue update.

Wow,I can't believe it's been three years since I've updated this blog.
Time sure goes by fast.
To be honest most of my time has been spent using FB to update little things.
After a whole heap of time spent in and out of the hospital and never ending medical stuff I just got severely burned out.


I was just tired of medical things taking over our lives.
Tired of letting that stuff define us.
Don't get me wrong my kiddo's still have a progressive syndrome that causes intractable epilepsy and severe cognitive decline,especially in Ariel's case,but I just didn't want that to be our focus.
At times I kept hearing myself saying "I just don't want to do this anymore" ,but unfortunately that isn't an option and we are not quitters.
 When there are major seizures or a major medical crisis we deal with that,but then we move on to other things.
I'm not burying my head in the sand and pretending that nothing is wrong,   

but we have to live a life that does not consist of just focusing on all that is wrong,that just makes you miserable and is hardly a life at all.
So like my blog says we are trying to make the most out of life.
The kids still see their Epileptologists,Neurologists and other specialists and are in major genetic medical studies all over the country to see if they can finally figure out this syndrome that they have.I was a little excited that on the paperwork we sent in with our saliva samples it had  Epilepsy with severe cognitive decline listed,so they must be seeing this.
When talking to the Epileptologist at Harborview he told me it is just not normal that people with Epilepsy even Intractable have such severe cognitive decline.
Maybe someday science will catch up with us. 
So the next several blog posts will share what we have been up to.
Some pretty exciting stuff I have to say.
Thanks for sticking around.

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