Wednesday, July 30, 2014

Good News Throughout The Galaxy

Freshly back from our 6 month post-op follow up appointment at UCSF!

 ~ Okay, I know his surgery was 8mos ago. We pushed this appointment back a bit. Can ya blame us?~

 The news is fantastic! As we walked out of the elevators from the parking garage on Parnassus, we ran smack-dab into a nurse we had on one of our various stays. She all but squealed with delight as she hugged us and asked for the latest update.

We felt at home all over again, but this time, in a peaceful way.

As we walked into the Pediatric Neurology clinic, I watched our Jedi lead the way. I couldn't help but remember the first time we went through that arch way... But I'll save that for another post.

We saw one of our many favorite Neurologists. We sat and talked for ten minutes about how our summer was going and how nice the weather is in S.F. in comparison to the 110 degrees it was back at home. Eventually, she asked a question that I had honest to God forgotten would be asked of me.

"Any seizures?"

That's right... SHE. DIDN'T. KNOW.

I let Renn tell her. It's his victory, after all.

He said, "No seizures. None. Are you proud of me?"

She looked at me with awe and hope (as I'm sure she couldn't quite believe my sweet boy), and I said, "Not since March 16th."

She cried. Then she jumped up and double-fisted-knuckle-bumped my boy who was BEAMING. She texted Dr. Genius to GET IN HERE, RENN IS HERE, and he came quickly,(later telling me he expected bad news). When she told him, a giant smile spread on his face. "Glorious. That's my boy." is all he said.

All in all, it was the best appointment we've had since we started this journey. I praised God the whole way home, and hoped that Renn's little light shown bright in that office, enough to give someone hope.

We go back in November for his ONE YEAR post-op appointment, and his post-op Neuropsychological Exam. Can't believe it.

However, in the ever-growing saga of our Jedi's life, we have something fun to share!

The Epilepsy Foundation of Northern California is having a remarkable event at Children's Hospital Central California on August 9, called Living With Epilepsy. It's going to be a fun day of great information and resources for families living with Epilepsy in one way or another.


The cool news is that our Jedi (and the rest of us, too) has been asked to share his journey with the audience! We are SO honored, and Renn is incredibly thrilled. We're getting pictures together of his surgery process- that includes the good and the bad, just like you've seen here. We are also trying to think about the most important details to discuss with others. 

Renn wants kids to know they don't have to be afraid.

Of course he does.

We are eager to meet other families like ours! So please pass this around (especially if you live in/near the central valley of California, or know someone who does!) and join us, because we'd love to see you! Everyone is welcome. Please just click HERE to register ahead of time so we know how many to expect!!

And starting in August, this blog is going to host different stories of families living with Epilepsy. Many ladies from a support group I started called "Moms of Epilepsy", have decided to bravely face the challenge of sharing their struggles, pain, success, and fears. The goal is to ED-U-CATE this world, and truly help spread the word that Epilepsy is a condition that needs more attention! I hope you'll join us...

Thank you for your constant love, prayers, and support, friends. God is so good...