In a Galaxy Far, Far away...

Hello, everyone. This is the first post, of a new blog that I hope will generate lots of love. This blog will be all about our adventures dealing with our 5 year-old son's Complex Partial Epilepsy.

I cannot promise you that it will all be laughs, fun, and games. But, I can promise that it will be real.

A quick background:

My husband, Rick, and I have been married just about eight years. Renn came first, in March of 2007, then Eli joined us in February of 2009. We are a highly active family, that rarely slows down. Sure, we take time to smell the roses, but it's usually done in a drive-by fashion! We love to be outdoors, and to be together. We live in the Central Valley, in California. We hope to someday move somewhere a bit more spacious, but for now, we're thankful for where we are.

Rick has a job that we can't talk about, and boy-oh-boy, are we proud of him. He loves the Lord, and that's his best quality. He's strong, funny, has his degree in Biology, played trumpet in the Fresno State marching band, and can handle pretty much any task placed before him. To say that I am a lucky gal, is an understatement.

I am a children's book author, but am also honored to be a stay-at-home mom. My family is my world.

Eli is a vibrant child who has been getting the short end of the stick, lately. But, I don't think he notices. He's a firm believer that he will rule the world one day, and I can see it coming true. He's strong and funny like his daddy, and is so lovable, his hugs will rock you to your core.

And that brings us to Renn...

Renn. Loves. Star Wars. And so, he is our little Jedi. No disrespect to Mr. Lucas, but Renn is a bigger and better Jedi than Yoda, himself. He is brave. He has a strength within him at 5 years old, that I simply do not understand. His journey with Epilepsy began in March, and you can read all about it HERE. But for those who followed back then, now is the time to share what happened yesterday.

As most of you know, yesterday we traveled to UCSF for what we thought was a simple introduction to his new doctor, and a consultation for a better Video EEG. However, when we got there, the story played out quite differently.

Long story short (okay, I'm skipping the introductions, and each time we begged,"Boys, please sit down!"), the doctor told us her plan. First, she was going to look over Renn's MRI and EEGs. If she thought that we needed to re-do them, then that would be the first step. If not, or after we re-did them, we would do one of three things.

1. We would go straight to surgery to remove anything she was able to find on the MRI. The first MRI showed nothing, but in the event that the UCSF MRI was better, and she saw something, then we'd take care of it.

2. (And this is where it gets quite scary) We will to something called a MEG (can't remember what it actually stands for, as I was about to throw up at this point in the visit), which is basically a magnetic view of his brain so we can pin point where the seizures are coming from. Or, we'll admit him to the hospital, take him off his meds, and inject a dye into his body every time he has a seizure. Once we pin point the general area, we move onto the next step...

3. They will take him into a two-part surgery. First, they will remove part of his scull, and attach the electrodes to his ACTUAL brain, to determine the precise location of the seizures. After that (not sure if it's weeks later, months later, or if it's during the same surgery- as I was pretty much a blubbering mess while she explained this), they will have a second surgery to remove whatever it is that is causing all of this.

The kicker? The surgery only has a 50-60% chance of changing anything.

That's. It.

We now have a tough decision to make. How do we choose between allowing our little boy to undergo such a HUGE surgery, or not giving him the chance at a "normal" life?? If he continues without surgery, he will not get a driver's license. He will not be able to grow up and become a Police Officer, like he so desires. And that kills us. We've simply run out of medications, now... So, we're taking on Master Yoda's infamous advice...

 

"Do or do not. There is no try."

So, as we go along, please join us. Please pray for Renn, and all the millions of others who are battling this disease. Ask others to do the same. And share Renn's story! In fact, please share any information that you feel I've given, that could help someone you know.

 

Renn is a Jedi, alright. And he's going to pull through... God has the biggest and best plan set in motion for his favorite Jedi. He says so, in Jeremiah 29:11. And we're grateful for that promise.

 

Thank you for joining us on this journey...

 

 

 

...more to come.