Happy Birthday, Sweet Jedi!

Happy Birthday, Renn!!!!

 

 

 

 

 

We love you, and are so VERY proud of you!! May the Force be with you today and for always. You are our treasure, our gift from God, and our true hero. We can't wait to watch you grow into the man you are meant to become...

 

Love, Daddy, Mommy, and E



Back On Our Home Planet

We made it home!!

Yes, we are at home, and our little, BRAVE Jedi is back to his usual tricks. We started the steroid last night, and will be taking his third dose in about fifteen minutes. So far, so good! No signs of a seizure this morning (he had three on the way home yesterday, making a total of five 7-10+ minute seizures for the day), and he's full of energy. Dr. Amazing warned us that he would be extremely hyper, irritable, hungry all the time, and he would hardly sleep over the next two-three weeks. But, if we get that and no seizures? I'm all for it.

Thank you for your support while Renn was in the hospital. The love was ridiculous, and I am STILL trying to comment on all the blogs that gave Renn the encouragement he needed. If you want to check what all my creative friends did for him, please head on over to Susanna Hill's blog, HERE. I'm warning you... Be prepared to cry, laugh, and have your socks knocked off!

Renn wanted to say a little something, too:

 

 

Also, we have a request... The people at the Empire State Building DENIED the request to turn the beautiful building purple for Purple Day on March 26th. Can you believe it? So, a petition has been started (and both the Hubs and I signed it). We are asking that every single one of you follow the link (click HERE) and sign the petition. It would be HUGE for Epilepsy, if we could do this!!

 

Thank you, again, to all our intergalactic friends... What a difference you make. 

"Do Or Do Not... There is No Try"


It's one of our favorite quotes by Master Yoda, and it is one that just so happens to be the most relevant quote for our family right now. And that has never been more true, until today.

Our little Jedi slept through the night like a champ, and we started our day with the usual... Pancakes, bacon, Eggs, and 10,000 medical staff members coming in and asking the same questions (UCSF is, after all, a University with many, many students!). Soon, Renn was elbow deep in addition, subtraction, short vowels, and journaling about his day. We worked until lunchtime, virtually getting his week's worth of independent study done all at once, and then Dr. Amazing came in.

We discussed how Renn's seizures are just... strange. He isn't getting any better, and because we are noticing some slight behavioral changes, she told me of her new plan. To be honest, I wasn't at all prepared for what she was about to say, although I knew that there wasn't a medication left that could help our kiddo. So she explained to me that she would like to put Renn on steroids, with the idea that they might help to "Reboot" his brain. From what she's/we've seen, there's nothing showing up that gives a clear "HEY!! IT'S ME! I'M THE REASON HE'S HAVING SEIZURES!!" insight. Instead, she's/we're seeing lots of activity on the right side of the brain, but many times the activity is on both sides. She's thinking that it could be as simple as putting jumper cables on a battery in a car, and in two weeks, ZAP! Renn is seizure free.

The side effects of the steroids are what have me pacing the floor...

1. He will become wildly hyperactive. To use her words, "Totally bonkers."
2. He will be super irritable.
3. He won't sleep much.
4. Quick to be angry.
5. Major appetite, resulting in a lot of weight gain.

Now, why on earth would we agree to such a thing? Here's why...

1. We will only be doing this for two weeks, with an additional two-week taper time.
2. In that two weeks, all seizures could stop. FOREVER.
3. If seizures stop, then there will be no surgery or medications.
4. If the seizures don't stop, then this was only a two-week change.
5. "Do or do not... there is no try." We've committed to stopping at nothing to help Renn.

So, we are clearly both terrified and elated at the idea that this really could be it. There are so many good reports about going this route, so we feel quite positive about it. But the downsides are pretty harsh, so it's a difficult situation to process.

Dr. Amazing also informed me that she will be sticking strictly to In-Patient care, starting July 1st. Yep. She'll no longer be Renn's #1 doctor. However, she is leaving us in the hands of another doctor (his name TBD after I've talked with him more) whom I met a little bit ago. He is VERY nice, and seems to know more than she did! Come to find out, he's not just a Neurologist... He's also THE Pediatric NeuroSURGEON, here. So, I felt comfortable immediately.

Lots of changes... We are also taking Renn off of Clobazam, as it did nothing for him, either. Essentially, if the steroids work, Renn will be medication free in one month. I can't even fathom.

Tomorrow he goes in for his PET Scan (for more information on what that is, and why it is used, please click HERE). It sounds strange to say, but we are hoping/praying for an ABNORMAL result. If we get that, we will know exactly where to go and what to do with our sweet Jedi's brain. Surgery will most likely be in the works, but it will be an obvious solution. If the results are completely normal (and I will use the new doctor's words, here), "Well, Renn will become quite the research paper, and a whole lot of doctors will be curious about him."

All in all, there is no trying when it comes to Epilepsy. Yes, you try different things, but ultimately you must DO them, in order to know precisely what direction to follow. We have yet to only "sort of" give Renn the care he needs and deserves. No matter the cost, sacrifice, challenge, or amount of tears, there just is no trying.

Ironic that Master Yoda had set the motto for us, a long, long time ago...




 

Pray that tomorrow, March 13, 2013, is the day they find where Renn's seizures are coming from. Thank you. :)

 

 



Intergalactic Friends Make the World Go 'Round

Renn is tucked in, all nice and cozy in the very room we were in just two months ago, here at UCSF. We were welcomed with warm smiles, and lots of "I remember you! You're the little Jedi!". It was pleasant, and yet a little sad for the Hubs and I. We just couldn't help but celebrate back in January, when we walked out of here. We thought for sure we wouldn't be coming back... at least not in such a short amount of time.

Eventually we said goodbye to Daddy and E, and the old routine of putting on those electrodes began. Renn had asked me on Saturday if I could please shave his head because, "I don't want to be all itchy and sweaty when they put the buttons on, Mom." (and if you must know, YES. I got quite emotional with his sudden, rational maturity).

 

 

 

The thing about the glue that is used to secure the electrodes into place on your head? It stiiiiinks!! And any person who has been through this (or their loved one standing in the room while it happens) can tell you, it's not fun!

 

In the blink of an eye, we had about a dozen different medical staff members in and out of our room asking the exact same questions, checking the exact same reflexes, reminding us of the exact same procedures. He ended up having a seizure right away, so that was good news (again, it's a weird emotion to have). Dr. Amazing came by, twice, in fact (she IS Dr. Amazing, after all!), and looked at Renn and the video I'd taken of a larger, quite different seizure he'd had two weeks ago. She is concerned, but is elated that we are here. The PET scan is on Wednesday. Ugh.

 

 

After a bit, we had a little visitor stop by! Her name was Chelsea, and she made quite the impression on Renn. It was absolutely adorable to see his face light up. I really hope they can come back tomorrow.

When I decided to open up my computer, I was at a loss for words. An Author friend of mine, Susanna Hill, had written this blog post for Renn. She encouraged him, and made a cute video that made him smile like crazy! He loves her books (which she also sent him, just before he came here... Even going on Space Mountain not too long ago, in the loudest, most elated scream he screeched, "Puxatauny Phiiiiiiilllll!"- an inside joke between he and I), and was amazed at her Star Wars lingo. But, as I kept reading, I saw that she also encouraged others to send Renn their best. She asked them to write words that would get him through, that would enable him to keep fighting, that would show him how loved he is by so many... most of whom might never meet him face to face. I was, and am, in complete awe as the list of friends and strangers bursting with love and encouragement for our sweet Jedi, continues to grow.

 

Renn loved ALL the entries... He's been enjoying the jokes, the comics, the puzzles, the illustrations, and the ideas on how to pass time. I mean, they are ALL related to Star Wars. Could this kid be in intergalactic heaven? Yes... I believe so! But the one he has asked me to show him over, and over, and over again was the video posted by This Kid Erik (the best book reviewer around... and he's only eleven!). To see it, please click HERE. Be amazed!

 

As Renn sleeps tonight, I know he is feeling like he is on top of the world. He has no reason to be afraid, because he has support, love, and encouragement coming from all over the world. Thank you, Susanna... What a gift you have given our son.

 

 

Tomorrow... is Day 2.

Purple Day

We have been looking for a way to spread the word about Epilepsy to our community. Breast Cancer has one of the biggest campaigns out there, and it's freaking awesome! You literally CANNOT walk by a pink ribbon and not think about boobies. Sorry, you just can't! And trust me... that's a good thing!

As we have gone on this journey with Renn- our precious, brave, (almost) birthday boy- we haven't had much time to join other families in awareness walks, fundraisers, or other such things, in order to help promote Epilepsy awareness. In fact, it hadn't even crossed our minds until a few months ago! So, perusing the Internet while Renn was laying quietly in his hospital bed in January, the search began and ended all with one click. Why? Because I found an easy starting place, and by this time next year, I decided our family is going to participate BIG TIME in this event.

That's right... Purple Day.

Purple Day was started by a beautiful little girl named Cassidy (ironically, that was one of two name choices we had picked out if Renn would have been a girl!), who decided she wanted to spread awareness about Epilepsy. She started this in 2008, and apparently, it has become an international extravaganza! She is currently campaigning to get onto the Ellen DeGeneres show, and I think she's awesome. Oh yeah, I should probably mention that Cassidy started all of this... at age 8.

What do we do for Purple Day? Precisely this:

 

Every year on March 26,

WEAR. PURPLE.

That's it! Yes, go the extra mile and explain why! Have a reason, give a voice to this wicked disease!

And please, go to the Purple Day website, and see what kinds of things you can do in your community.

My goal is that every time someone walks by a purple ribbon, they think about those amazing, brilliant, talented minds who are all battling Epilepsy. And perhaps one day, our children's children can walk by a purple ribbon and think nothing more than what a beautiful color that ribbon is.

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."

NO.

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.



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.

 

Onward!