Lolachair

Milestones and Moroccan Hackers

Okay, so I know it appears it’s been months since I’ve posted, but hear me out….  we’ve had some technical difficulties, let’s say. My brother was updating my blog and we changed designs, etc. I checked out the blog to see what changes he’d made, when all hell broke loose. We were hacked! And by hacked, I mean completely decimated. I quickly called my brother, who was online working on other projects, and he was as shocked as I was. He spent dozens of hours trying to put the pieces back together. We’re missing a few recent posts (which I wasn’t smart enough to type in word), but that’s okay. We’re lucky that my brother and his team are on the ball and were able to put the little wankers out of commission. I mean, who hacks a website about a kid with a brain injury? With very little traffic? Wow. I’m naive, and completely tech-illiterate – but I was surprised. Anyway, it’s Fort Knox around here now. All good. Thanks for saving the day, Uncle Sean. No really.

Lola’s been learning lots of new things at school. There are days when her teachers should receive some sort of bonus, or subscription to wine-of-the-month club or something. She continues to be a handful. She can go from sweet and playful to full-on Medusa in the blink of an eye. Often her moodiness stems from her not getting her way. Luckily her teachers don’t give into her like we do, which is great. She’s loving her time in the gym, as well as the library. This last one makes me curious to see what goes on in the library, because I can’t picture her sitting quietly while someone reads a book. She also loves to be outside at school, but the community walks continue to pose a challenge, as this kid wants to go where she wants to go…..whenever she feels like it. She loves taking the bus to school with her awesome bus driver Brian, and her attendant, Carol. She has a much shorter bus ride this year, which allows her to sleep in an extra hour in the morning. Nice!

Lola’s one-year seizure free anniversary was the end of January, and we celebrated by sending brownie sprinkle cookies to school, and sending an edible fruit arrangement to our friends at Medical Day Treatment, where Lola received IVIG for several years. I would love to say that we’re still seizure-free, but sadly, we’re seeing little “episodes” creep in from time-to-time. Yes, we’re worried. Beyond belief. They aren’t anything like the seizures we endured for years. It’s more like one or two a day, and they’re much milder, less debilitating, and still annoying to Lola. While she used to suffer from tonic-clonic (grand mal) dozens of times a day, the current “episodes” she’s having are more like simple partial seizures. She doesn’t drop to the ground and convulse – she tilts her head, her weak arm twists rhythmically, and her walking becomes off-kilter. We have an upcoming appointment with her neurologist, as well as neuropsych testing on Tuesday. I’m sure they won’t give us any answers, but perhaps her meds need tweaking now that her weight has increased, etc. Sigh. Always something.

Liam spent the fall/winter playing indoor soccer. He was an awesome goalie, and his skills improved so much as the season progressed. I couldn’t believe his nerve – he never backed down from a shot regardless of how hard/fast it was coming at his face. What a guy. He’s taking a break from soccer this spring (it was pretty intense – and quite a time commitment) to do some gymnastics classes, art classes, and wait anxiously for the start of Downhill Mountain Bike season. He’s stoked to get out on his bike. We’re heading to Kamloops for his birthday/Easter so that the boys can do some shuttling/biking. Lola and I made sure to pick a hotel with a nice pool, because we’ll be spending lots of time waiting for the boys. We’re attempting a “family trip” to see how things go – Lola’s not much of a traveler, and she likes her stuff and her surroundings at home. Wish us luck.

I’ve started a learn-to-run program at our local community club, as well as a couch to 5 k running program on my own. It’s pretty brutal. I’m so out of shape. No seriously. I’m on week three, and it’s starting to become less painful. I still have quite a long way to go. It’d be nice to be able to run 5 km without my lungs burning, etc. And hey, it’d also be nice to drop 30 pounds. Hopefully I keep at it.

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We’re hoping the weather gets nice soon so that (I don’t kill someone) we can get Lola out on her adapted bike, as well as get her going on our new Wee-hoo- i go. There are some amazing folks at Weehoo – namely Jeff, who hooked us up with this awesome bike trailer/attachment for Lola at cost. Wow. We will attempt to get some pics of her on it. Basically, she can pedal if she wants, or she can just hang out for the ride. It’s way better than a trailer, which she found confining and frustrating. The site-lines in the weehoo are perfect! I highly recommend this product – especially for families with special needs little ones. How amazing to have a means to get out and be active with the whole family, rather than one of us staying home with Lola while the rest ride. Can’t wait!

Steve’s anxious to get biking season started, as he has all his events coming up, as well as other races to attend. Liam will be heading to some of the races this year too, and hopefully he’ll even get to race this year.

So there’s a bit of an update for y’all. Lots going on. The kids are thriving – even with this brutal winter. They have a sweet little relationship with so many inside jokes and games. They also fight like typical siblings, and get on each other’s nerves. That’s how it goes.

Thanks again, Uncle Sean, for all the time and effort you’ve put into designing and maintaining this blog. This is for you.
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