Bah Humbug

We don't like Halloween. Okay, Liam does, but for the rest of the family, it brings back the reminder of where we were three years ago - before this part of Lola's journey began. We just want the holiday behind us. That and the fact that Lola can't even enjoy any of the candy and treats this year just adds cruelty beyond belief. But she's still with us, and she's still awesome. It's just another day, right?
Lola had her Halloween party at school, and this year she was a clown. A very cute clown. Liam had "storybook character day" ?? at school on Friday and went as Harry Potter. I guess he liked it so much that he's ditched his "Biker dude" costume and will transform into Harry at about 5pm tomorrow. We'll pop Lola in the wagon and see how it goes. If it's cold, we'll just do our street (Liam and Daddy can go for miles - Lola and I are way too delicate...lol).
On Friday, I met with the amazing ladies at Lola's school (GRIT Calgary Society) to discuss her IPP goals for this year. We have such a great team - truly. These women love Lola - they really do - and it shows through in every decision that they make to benefit her. They've been raising money for years to build a new school - and they work so incredibly hard so that kids like Lola can make huge gains and lead happy, meaningful lives. I can't say enough about her school.
Lola's been doing well with her new med - Banzel. We are still titrating the dosage - we've got two more weeks to get up to our target dose. So far, so good. I really want to see how she does when we start to decrease the valproic acid. Baby steps.
Here's a video of Lola at the mall - she was really unimpressed with the ride-on toy....barely tolerating it really. Steve got a chuckle out of it though.

Brighter days ahead...

Though you'd never tell from these photos, Lola's had a tough old month. She had an ambulance ride and a long trip to emergency - resulting in us leaving without ever seeing a doctor - all due to crummy seizures. She also had some crazy days with lots of screaming at extremely high decibels - for what reason, we're not sure. Something was bugging her, that's for sure. We finally saw our neurologist after waiting five months for an appointment. He was fairly negative - focusing on the severity of her initial infection. I guess we looked like we needed a reality check. At any rate, we weren't happy with "stay the course" so we advocated for a med switch. We started Banzel/rufinamide last week and are titrating it up very very slowly. Our hope is to add this med, then bring it up to therapeutic levels, then drop the valproic acid. We sure don't want her on 3 seizure meds. We are still doing ivig every three weeks - just went on Friday and Lola did amazingly well. She just hung out - didn't sleep - didn't scream - just listenened to Glee on her ipad and snuggled! Wow, what a girl. She's doing great the past couple of days and we hope this trend sticks around. Some other options the neuro gave us included implanting a vagus nerve stimulator (VNS), which is like a pacemaker for the brain, and another option is for a corpus callusotomy (sp?), which would require disconnecting some fibers between the left and right side of her brain. Um. Yeah. Not likely at this point, anyway. If they could give us decent odds, we would consider it - but there are too many risks and variables, with no guarantee of seizure freedom. So, there we go. Sobering on many levels.

Liam is doing pretty great so far in grade three - he loves his teacher, he has some friends, and brings home 100% spelling tests. We'll try not to focus on one or two incidents of fighting....we think he may have been framed. ;) He's doing gymnastics - tumbling and trampoline and he loves it.

Lola's doing really well at school, as reported by Deannie, Lola's aide. She has a little friend named Gracie, who sits beside Lola at snack, and holds hands with her on walks. So amazing. Lola attends regular pre-school with her typical peers. She's been doing so well with things like focusing, sitting in circle, etc. I guess yoga wasn't her favorite (ha), but she really likes the dance studio. We've had to postpone her dance lessons as we struggle to get ahold of these darn seizures.

Well, Lola's watching her Bobs and Lolo DVD and it's over - better go help her out! We're trying to embrace the good days and hang on tight for the bad. Isn't that what everybody does?