Saturday, November 1, 2014

Epilepsy Awareness Month 2014: The New Normal

It's hard to imagine that one year ago today, the grid was on... and this Jedi was offering his Halloween candy (that was so awesomely smuggled in by Daddy and E) to the technicians who were watching over him.

We started off November, aka Epilepsy Awareness Month, knee-deep in the destructive path that Epilepsy carves. I remember so distinctly that we were recovering from the absolute terror that was Renn's near-death experience. His adverse reaction to Cefazolin almost took him from us. But, like the true Jedi that he is, he pulled through, and lived to fight another day.

Today, we started off Epilepsy Awareness month exhausted... from an epic night of Trick-or-Treating. Then, we jetted off to soccer in the rain, and we're now following that up with movies and cuddles on the couch. It's unreal. God has transformed the world we knew into this vast land of wonder, joy, and excitement. Granted, not everyday is easy. There is still an immense amount of fear (especially with me) that the evil seizures will return. But for now, they are at bay. And we never hesitate to thank our Heavenly Father for each moment that is seizure free.

In September, just four days shy of Renn being 6mos seizure free, our Jedi did something... odd. At soccer practice, he began to slowwwww dowwwwwnnn. It was like watching a real-life person pretend to talk/walk in slow motion. It was bizarre. I was quick to panic and lable the event as a seizure. Both Renn and myself left soccer practice that night just weighed down with disappointment. I couldn't even encourage him, because I felt that somehow I had failed him. Luckily, the hubs came in like the lionhearted man that he is, and helped us through it. When I called his Neuro team the next day, one of his doctors said she was incredibly confused by the description of the event and said we shouldn't be so quick to assume it was a seizure. She said he may have been overheated and dehydrated, and that his brain may have wanted to seize, but couldn't. Sure enough, it was 105 degrees outside that day, and I don't think he'd had enough water.

Needless to say, he's not had anything since. So, it's with great pride and thankfulness to God that we can say that Renn is now...

 7.5 months seizure FREE!!

Between soccer 5x a week, Cub Scouts once a week, homeschooling, and church... the new normal in this house is simply trying to keep UP with these two active boys. Thank you, God, that we still have the opportunity to do such a thing. We just came back from his post-surgical Neuro phych evaluation at UCSF, where we finally got to reunite with the Mighty C. It was a tearful reunion for me, as I watched the Jedi jump into the arms of the nurse he still refers to and talks about every single day. We've been back to UCSF about six times since surgery, and the Mighty C hasn't been there! So, this was an incredible gift for Renn... and hopefully the Mighty C as well.

As we embark on Epilepsy Awareness Month on this blog, prepare to hear from a couple more families who are journeying through it all, and prepare to learn a bit more about what it's like to live with Epilepsy.

Here we go! If you have a special way you spread Epilepsy Awareness, let us know! Or, if you have specific questions that can be addressed, contact us and we'll get to answering you right away.

God bless you all... Here's to being seizure FREE yet another day!