Wednesday, January 9, 2013

Jedi Master Training Mission: Day 3

It's truly amazing what TWELVE HOURS of sleep will do for an almost 6 year-old!

Today, we were quite busy. Dr. Amazing came in pretty early to discuss the (what they call) "event" that Renn had last night. She was happy with it! A student of hers had already told me that she thought we could go home today or tomorrow. And honestly, I was pissed. Both the hubs and I are the kids of people that like to work hard and get EVERYTHING done, before we play. And with Renn being in the hospital ALREADY, why not stay here and get all the tests done at once??

Well, Dr. Amazing agrees. And since we just took him off his medication last night, why not wait around to see how badly his seizures can get WHILE WE'RE HERE?? So, the earliest we'll leave is Friday, she thinks. But that all depends on if the EEG results are clear enough to see where his seizures are coming from. If they aren't, we'll hopefully stay for further testing/imaging. I don't want him to have to come back.

Throughout the morning, we got to Skype with another amazing friend, he got some work done with the help of a teacher's aid, and he got to visit the playroom again!! And I got to take a SHOWER!!! (Yes, it is the little things, thank you very much!). He was just in the best spirits. It was incredible to see.

At lunch, a knock on the door lead to a very cool visitor!

Officer Brian, of the SFPD, came by to play a fun game with Renn and hang out for a bit. Being a big Star Wars fan himself, the pair hit it off quite well.

They played a mean game of, "Who Will Smile First", and Renn told him all about how he was going to be a Jedi Police Officer, one day...

... and told Officer Brian to put his hands where he could see them.

Renn was so joyful, so happy. It was absolutely wonderful.

He had a pretty significant seizure around dinner time, that left me undone. It didn't last very long (about 2-4 mins), but he shook far more violently than before. I think I got a preview of what not having Lamictal is going to look like. Deep down, in my most secret place, I thought it was possible that I was mistaken back in February of last year, and that he really hadn't had a seizure after all. And I thought that maybe, just maybe, all this medication we were forcing on him was actually causing the seizures. After tonight, that last ray of hope was blocked from view, forever. Now, I think the hubs and I are on fire, and will stop at nothing until Renn is okay.

It broke my heart today to watch that Officer hear Renn say what he wanted to be when he grew up. I saw it in his eyes the moment he realized he was talking to a kid who's chances of actually joining the force were slim to none. This Officer was somewhat of a newbie... It was probably the first time he'd experienced such a hopeful, yet soul crushing, conversation. I am very grateful he kept a smile on his face, and talked about being Renn's very old Captain, one day.

Renn and I just played for the rest of the night. We played Trouble, and broke out some PlayDough, and he created this really cool green arch.

The night was not complete without a little moustache competition, though.

He is once again sleeping, on this Wednesday evening. I saw clouds from our 6th floor window as the sun was beginning to set, and it looked like rain. I love the rain, and I always see it as a good luck thing; never anything to be dreary over. We have three seizures captured on camera, a great team of doctors, nurses, specialists, tutors, and friends in this hospital, a daddy and a brother waiting eagerly at home, and...

...each other. We're all going to get to the bottom of this.
Goodnight, y'all.


  1. Yay, for Officer Brian. Renn does look so much happier than yesterday, thankfully. Good on you and Doctor Amazing. We are always here, Bethany!

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  3. Officer Brian sounds like a good soul. Does he volunteer at the hospital on a regular basis?

    Love the moustache competition!! LOL!

    Yay! Great to hear you and Dr. Amazing are on the same page.

    Love and hugs to you and Renn!!

    1. The department as a whole seems to volunteer quite often. I didn't ask if this was his first time, but it sure seemed like it. :)

  4. Great 'staches! So glad you are able to convey what is best for your child - so many patients and parents never find the strength to speak up for themselves! As for future dreams and professions, they change, regardless of obstacles, and if my dream had come true I would be about 6'4", a black male and Sports Illustrated would have named me one of the 40 most important athletes of our time. Let Renn know I wanted to BE 'Dr.J' (Julius Erving), and although I still love basketball, I also love my creative side too!

    1. HAHAHAHAHAAAAA!!!! Oh my gosh... That's so hilarious!! I'm going to start calling you Dr. J, anyway!

      Thanks, Julie. :)

  5. Oops - just read that Dr. J is 6'7" - a whole foot taller than I ever was!

  6. Officer Brian! I love him so much. Nice to know that good eggs are around all over the place. Hang in there. We're with you.

  7. I know you can be a Jedi Police Officer someday Renn! (I have an idea for a video... :) )