Ever since we started down this road with Renn and Epilepsy, I couldn't help but notice the strange parallel it had to Renn's favorite movies... Star Wars. Much like the genius blockbusters (okay, maybe only three of the six were "genius"), Epilepsy has its drama, its terrifying unknowns, its harrowing escapes, its painful downfalls, and its heroic victories. And as the one year mark of Renn's diagnosis approaches (this Saturday, 3/23), we reflect on what we have learned, and we hold on tight for what is ahead.
I am here to say, that like the other seven medications, the steroid has done nothing. And we were/are so sad.
What to do? I mean, really? NOTHING is working. Yes, there is the option of a diet change. So before you start sending me the links to that Hollywood movie, please know that we are quite aware of our options, and the doctors are too. And that might have been next, but a new plan is going into effect.
See, in Star Wars, two of Renn's favorite scenes are when Anakin unveils that the Sith Lord is actually Chancellor Palpatine, and when Luke Skywalker removes Darth Vader's mask to unveil the man who was once his father. Coincidence? Sigh... a psychologist could have a field day with that! However, much like those two scenes, we are faced with the unveiling (and exact location) of Renn's own little Sith Lord...
We got them on Monday, the day before Renn's birthday. Wanting to focus all our time and energy on his big day, we packed away our feelings about the news we received. But now, a few days and several emails with a couple doctors later, we are ready to share that they did indeed find an "abnormality" on the Right Temporal Lobe of Renn's brain. No, the MRI never showed it, nor did the CAT scan. And when we did the MEG, it wasn't clear enough for them to give us a giant yes or no answer.
So, how does one react to that? If you have an idea, please let us know. Because while we are elated that there is FINALLY a pin-pointed location as to where the seizures are coming from, we are also devastated that this means our little Jedi will be having brain surgery sometime very soon.
We will be heading back to UCSF for another MEG (ugh), and then once more for a surgical consult, once everything has been officially scheduled. We don't have as many answers as we would like at the moment, and that is aggravating. But, we know that this is God's plan, since we asked our family, friends, and entire church to pray for His will. But it's a difficult idea to comprehend, especially since we were just lead to believe that he was basically inoperable.
Purple Day, please keep Renn in mind. Wear purple proudly, and tell everyone why. We will have a full report on how we celebrated! Tune in for that next week!
Thank you for your love and support, as always.