Wednesday, February 27, 2013

A Jedi's Dream Come True

There are those times in your life when your dreams really do come true.

And for our little Jedi, many of his not only came true, two weeks ago, but they were far surpassed.

That's right... The hubs and I kept one GIANT secret from Renn, when we went on vacation to Disneyland, two weeks ago. I'm not sure he even understood that Disney now owns his one and only true love (for all we know, Disney might actually own Renn's love for Star Wars, too). We had been in the park for about two hours, and managed to land our behinds on the little blue line that separates the Jedi Padawans from the audience. Renn could hear the music, and he could read the Star Wars insignia, but he didn't have a clue what he was in for.

Now, I had done everything within my power to get him chosen. I had sent emails, I had talked with City Hall upon our arrival, I made sure each member of the Telles family was wearing a Star Wars shirt (yes, even me), but even then, I worried it wasn't going to be enough.

Renn HAD to be chosen.

So, this raging momma grizzly bear marched her little booty up to a gentleman who looked like he belonged in a Star Wars movie.

Please be an employee. Do not offend a fellow Star Wars nerd. Please be an employee.
An employee, he WAS! I started by explaining Renn's story, and quickly found myself being quite emotional. Okay, I out right blubbered and sobbed as I begged this poor man for help in guaranteeing my son's acceptance in this magical ordeal. His face was emotionless. For a second, it occurred to me that he might just be a janitor. But I didn't care. My son has been through hell, and I was going to get him on that stage!

"Well," the nice, yet emotionless man stuttered, "there's no real guarantee that he will be chosen."


He went on to explain that Renn's daddy needed to hold him up high. Make sure the shirt and the birthday button were visible, and Renn needed to be ten times more jubilant than any child EVERRRR.

Challenge accepted!

I sobbingly muttered a thank you, and ran to my seat. Renn asked why I had black paint coming from under my sunglasses. Oh, honey... If you only knew what was coming.

Then, the Jedi Master appeared.

Renn's eyes widened, but I still don't think he understood. We finally had to let him in on our little secret, because we wanted him to scream and shout when the Jedi Master began choosing kids.
The Jedi Master started choosing kids. His voice was strong, powerful, and so commanding. I heard him choose several kids, but mainly I could hear my husband yell and shout through tears of his own as he held our Jedi up on his shoulders. I heard Renn say, "Me! Me!! Pick me, PLEASE!!"

And then, as if God said it himself, we heard, "You there, Dad, put down your son. He's a Jedi, now."


To say we "cried" wouldn't be doing it justice. Even little E shouted for Renn as he got his lightsaber and cloak.

And from there, he trained. They showed him how to use the lightsaber (to which he turned to us and gave us one of those are-they-FREAKING-serious?? looks), and then were swiftly interrupted by the booming sound of the theme song of ALL theme songs...

It only meant one thing.

People, I'm serious. I honestly thought only Darth Maul was going to be there. I had no idea THE Darth was going to be there. Renn's face was priceless. I'm sad I didn't capture it.

It became clear as they sectioned each Padawan into two groups that these kids were going to be given the chance to fight one of these Sith Lords. I quite literally began praying out loud that Renn could fight Lord Vader. Seems silly, I know. But, jeeze... This boy deserves it.

And wouldn't you know it...

Renn's dreams came true.
What made it amazing is when Renn got bold. He used the Force on Darth Vader, and the Jedi Master didn't know what to do. He laughed, kind of nervously, and said, "Oh no! You can't use such mind tricks on this one. He's much too strong! Here, use the Force on these weak minds!"

Pointing to the Storm Troopers, Renn used the Force on them, and knocked them clean over!
Oh, this trip was incredible, and oh so needed. but nothing would have been worth it if our little Jedi didn't get to do this. He hasn't stopped smiling since. And as we approach admitting him to UCSF once again, he will have these memories to look back on and help get him through the rough road ahead.
After Renn got his diploma, the Jedi Master came right up to us and complimented Renn on his skills, and wished him a happy birthday (it's not til March 19th, but we were celebrating his birthday, E's birthday, and our anniversary!). I thanked the Jedi Master, and explained the situation and Renn's story. He asked if he could take a picture with the bravest Jedi he's ever met.
And that's just it; Renn continues to be brave even though his seizures are getting worse and worse, even though his school is not helping him the way they should be, and even though he's going back to the hospital for another set of long, terrible tests... He truly is...

The bravest Jedi.

Friday, February 1, 2013

Back to Training

Happy February!

We spent the rest of January quite sick! And by "we" I mostly mean me... But, we survived, and are all looking forward to the boys' birthdays and our anniversary. We're even going on our first EVER family vacation!! But, we'll talk about that as it comes. :)

As far as Renn is concerned, I wish with all my heart that I could say that the Clobazam worked and that we are celebrating 3 weeks seizure-free. But, Clobazam not only didn't work, it REALLY didn't work. The side effects were difficult, at first. Renn was apparently falling asleep in class, and was constantly saying that he was too tired to complete his tasks and work. Eventually he got used to it, and overcame the exhaustion, but his seizures continue, no matter what.

He is still having 1-3 seizures a day, with the occasional days filled with 4-5 seizures. He has begun to recognize when a seizure was about to happen, which is strange and awesome at the same time. He's said a few times that he's had seizures at school, but his teacher has never mentioned anything to me. Also, his seizures themselves are changing. He is now running/high stepping in various directions. That's hard for us to witness.

We've been waiting to hear from Dr. Amazing on the next course of action, and she's been waiting for the full results from the MEG. She's been checking in with us regularly... Constantly asking how he's doing. But today, she finally got back to me. And here is what her email said:

"How's he doing? The MEG wasn't very helpful – didn't identify a spike focus, but there was only one really good discharge because most of his discharges occur during sleep. So we might have to bring him back for a sleep deprived or even a sedated MEG to get better data. I'd also like to get a PET scan which can help us in thinking about whether he has a focal area of his brain in which the seizures are coming.
Let me know how's doing…"

My reply was difficult to make, seeing as I really didn't see this coming. And I mean, I really didn't. I assumed that, well, Renn was done. What we were doing was it, and he was going to be doing this the rest of his life, and he'd be Renn... just the way he is. But I asked if we could do the MEG and the PET scan during the same visit, and if he'd have to stay the night again (that thought brought me to tears, seeing as he's told me every day since we've been home that he didn't want to sleep at the hospital EVER again). Her response?

"...In terms of the MEG and PET, we'd have to do them on separate visits, and I think I'd go for the PET first. So let's see how the Vimpat goes, and then we'll arrange the PET scan and clinic visit the same day.

Keep me updated….hi to Renn."
Oh yeah, did I forget to mention that we are starting him on ANOTHER medication? This one is called Vimpat, and it is intended for focal seizures... something we still aren't sure he has. And I'm VERY scared that this one will make him worse, just like Trileptal did, since they are similar medications.
So, back to UCSF we go. Not sure when, but we'll be going back. Yeah.

I promise to post about just what, exactly, the PET scan is, what the MEG is, and why Dr. Amazing is going forward with these tests. I'll get super scientific and everything! But for now, I'm going to pick my Jedi from school, and enjoy the weekend with him.