Monday, March 11, 2013

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.


  1. Golly gee, Bethany, you made me all teary! It's such a small thing, but I'm so glad if it helps. I knew Renn would love Erik's video - it was fantastic, and totally perfect! I can't say for sure what my favorite part was, but I think it was when Jedi Renn decided to disguise himself as a pizza delivery guy! :) Good luck as the tests continue. I hope the doctors get really useful information that will help them solve the problem. My friend Pat knows a couple people whose kids had severe epilepsy with hundreds of seizures per day who responded VERY well to stem cell treatment, so there are things out there that can work. I hope they'll find one for Renn!

  2. Wow! Sounds like an encouraging day all around. Praying for the whole fam!