Sunday, August 28, 2011

Lola on Shaw TV

I think this one works. http://www.pinkbike.com/video/212833


Video from Western Open

http://www.pinkbike.com/video/212844 - Shaw tv footage - Liam's in this one - look for his green shirt in the bike race. Grampa Ed's in there, and so am I. Liam's buds Tara and Elladee are in this footage as well.

Pictures too!































Okay, and another post just got eaten - with pics and video links.... sigh.























Summer Update?

Okay, I think I may have solved my bloggy problem. How frustrating. Of course I rarely write in word, so my posts are all gone. Whatever. Trust me, we had a decent summer. Liam had an incredible one, actually! We bolted to Ontario the second he finished school (literally that night), where he spent a month with his aunts/uncles/cousins/grampas/grama/papa/and new friends made at camp. He had a blast. After that, he flew to Ottawa to visit Grampa Ed, where he had some more amazing excursions involving farms, fishing, swimming, movies, waterslides, and a whole lot of fun. (yes, I’m super-editing this post because I’m gun-shy after losing several others!)
We returned home in time to get ready to head down to Golden for the Western Open (aka Lola’s race). Steve planned this amazing event for a year – seriously – a whole year! It was, without a doubt, incredible. He took care of every last detail to ensure that it was a top-notch experience. Liam had a blast selling Gatorade (he raised enough money to pay for ten music therapy sessions for Lola!), hanging out at the house with several pros and awesome people in the industry, and just amazing volunteers in general. He got to hang out with Kirt and Lindsey Voreis (google them!) and Tara Llanes and Elladee Brown (google them too ;), and had a blast at his first bike race – he got 4th in the Shimano Kids’ Race and got a really cool medal to boot.
Lola’s making me speed up this post. Seizure-wise, we’ve had some ups and downs. We introduced carnitine due to her low levels, decreased energy, etc. which helped somewhat. We continued with our MCT oil, which helped somewhat. We continue to do ivig every three weeks which is helping somewhat (actually, it helps a lot). We decreased her ratio from 3:75 to 1, which was way too tough on Lola to 3:25 to 1. We attempted the low glycemic index diet, which was disastrous for us – but we literally tried it for one day. It caused her to have 5-6 huge tonic clonic seizures – way out of the norm and very scary. So now we’re slowly decreasing our ratio – going to 3:1 at some point this month. I’ve been trying some new recipes with her and she’s certainly glad to have some new meals. Anyway, she’s even had some seizure free days – if only we could make them stick around. We’re not giving up on the diet…just tweaking it to make it livable for Lola. The girl likes to eat….
So we’re back to school this week! I start on Monday, Liam starts on Thursday, and Lola starts next Tuesday. She’s missed Deannie and her preschool teachers, as well as her team at GRIT. This will be Lola’s last year with them – and I think it’s going to be another amazing year of learning and growing for this kid. Liam will be going into grade 3, he’ll be starting a new gymnastics program that combines tumbling with the trampoline, he’s getting a shiny new retainer and headgear to wear to bed (poor guy), and he’ll be starting basketball. He’s getting so grown up…
Okay, Lola’s all done with this blog for today, because it’s snack time. Snack time trumps blog…

working??

this blog's killing me slowly with its inability to publish my posts...