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...

Lola's Big Day

Today was Lola's year-end celebration at school. Deannie rehearsed and practised, practised and rehearsed so that Lola could participate in the songs and ceremony. It was a big deal. Lots of patience, waiting, following instructions - and you know what? She did great. Lola, that is - well, Deannie did great too, but this is Lola's blog. :) It's hard to put into words what I felt at that ceremony. I was afraid that Lola would have a seizure when she was supposed to be having fun and celebrating. It felt odd to be the parent of the special needs child - to see my child pitied. That part was difficult. But you know what - there was far more kindness and genuine smiles from all those people as well. It didn't erase the fact that no, my child wasn't singing the songs, nor participating in the actions - but what got me through the tough parts was Lola. Lola with her shining persona - highlighting the moment for me, Deannie, and Dora. I'm so incredibly proud of her. So truly, very proud. She smiled, loved the applause, and everything was okay! We tried to hide in the back so that Lola wouldn't see us. At one point, she scanned the crowd, through the 6 or so rows deep of audience, and set her sights on Dora. She wasn't happy at all, but she worked it out with Deannie's help. She spotted me too - and this just cracked us up. She was so mad. At one point in the morning, the kids all filed in one at a time to get their diplomas, so Lola had to walk right by us. That didn't work so well, and she got right into my lap and gave me big kisses. So I held her hand as she went up to get her certificate. She got a pretty big applause from the crowd. I remember a time in a patient-care conference, where Steve, through tears, asked the team of doctors, "Will she ever go to school?" So now we have our answer.

Lola, you are incredible. I love you with everything I have. I've never been so proud. xo

p.s. she stole a little boy's rice krispie square with cat-like ninja reflexes - I wrestled her to the ground before she put it in her mouth. Good times.

argh

Okay, so I took pity on you poor blog readers and updated you a couple of weeks ago, but it won't post. So it's hanging out in my draft folder and I'm so great with technology that I can't figure out how to post it.

Anyway, I'm not going to re-hash. It's not all that interesting.

Lola is busily wrapping up her second year with GRIT. She works with some pretty amazing people. I know she's going to miss Deannie like crazy over the summer. Lola has her preschool "graduation" (into the next year, I guess?) on Thursday. They've been rehearsing for weeks. I am excited to see what Lola gets up to at the celebration. They had movie and pj day yesterday at school and though Lola was very into the popcorn and jello, she wasn't too interested in watching a movie. Big surprise! What a girl.

Liam is happy to be wearing shorts and t-shirts to school. Really. It's a very big deal for him given the long winter we've all endured. He's in his third year of baseball and doing really well with his hitting. He spends most of his time in right or left field which he doesn't love, but it's good for him. He gets to practice paying attention for hours of no action in the outfield. He's looking forward to our trip to Ontario - and he's currently focusing on what sport he'll take at Camp Olympia. This kid gets the best summers, I'm telling you.

Steve is working hard on Lola's race. Like really hard. He spends hours a night on it and it's going to be amazing. Every detail is thought out - and it shows in the final product.

And I'm just busy wrapping up the school year. June is crazy with graduation, the wrap-up with my own kids, evening "functions" that must be attended (both work-related and not), etc. I'm looking forward to a slower pace this summer.

Speaking of summer, we're heading to Ontario July 1. I'm worried about how Lola will do on the plane. Usually we just feed her the whole time and that keeps her busy. With her diet, I can't really do that, and she'll tire of her ipad. 3 1/2 hours......I hope she can do it or we might be driving back. Did I mention we haven't booked return flights? Yeah. Good one. I was waiting for a seat sale that never came. Anyway, it'll be me and the kids and Dora (Lola's caregiver...did I mention she's amazing? Lola LOVES her. There are lots of hugs and kisses coming from my girl all day long.) So I'm looking forward to getting the kids outside, taking them to the beach, and eating Firenze's pizza. Steve wants me to fed-ex him a pizza. He's not kidding.

Long overdue post!

Okay, so I haven't been the best blogger lately. In my defense, I've been kinda busy. Lame excuse, but it's my blog so I can do things like that.

Lola is still on the ketogenic diet. It's still not enough food for her, and it's still a rough go. That being said, since adding the MCT oil (medium chain triglyceride oil - to boost ketones) and upping her ratio to 3.75 (which means even fewer carbs/protein), we're finally seeing some results. We are seeing a reduction in seizures, and she's just all-around happier. She's been quite vocal lately, and has been making some nice gains in her various therapies. She's just finishing off her second year with GRIT, and her first year of preschool. Aside from the seizures, she's had a great year. She loves Deannie (her Developmental Specialist/Aide through GRIT), and Dora (her caregiver) and is well-loved and taken care of while we're at work. Her new favorite hang-out is in her room - I don't blame her...it's pretty cool in there. She still loves to snuggle and give really big kisses. She also enjoys dismantling the entire main floor - nothing is safe and she's got a pretty decent reach. I put her in time- out the other day because she threw Riley's ceramic dog bowl across the kitchen. The look on her face was priceless....like I didn't realize that we aren't supposed to time=out a princess. Funny, sassy girl.

Liam is busy wrapping up second grade. He can't get enough of being outdoors, after a looooong winter cooped up inside. He's playing baseball again this year (well, when it's not raining, that is). We went on a field trip to the Children's Festival, and it rained the entire day. Did I mention it's an outdoor festival? Fun. He was so happy to have me chaperone the trip and sit with him on the bus - aka the "cheesewagon." He's already got a nice tan going, and is anxiously awaiting our trip to Ontario this summer. He will spend a week at Camp Olympia with Grama and Grampa and Jared, a couple of weeks at Aunt Pub and Uncle Lipper's, and then he heads to Ottawa with Grampa Ed. He's a lucky boy who's going to have an amazing summer!

Steve is working hard to prepare for Lola's bike race which takes place in August. He basically has everything done so far in advance that he is just marking time until registration opens. It's going to be an amazing event - hope the weather's better than last year!