Sunday, October 30, 2011

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.

2 comments:

  1. Thanks for posting on my blog - glad to "meet" you! I also agree - I'm NOT a fan of Halloween - as three years ago we were in the middle of Cici's fight for her life as well. It's not exactly a good memory. I get it - and I feel bad for not really getting into it for my other kids, but I just can't help it. We also battle seizures, and currently have them under control, but good luck with those meds - they are tricky!

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  2. hi new to the post, saw a link to it in another website. She is beautiful. I have a son with Mito (luckily he is doing awesome except for some tired days and is now a different kid with the new treatment regieme) I have been doing a lot of reading lately about cases like Lolas, If you can send me an email, I have the name of some drs who might/ or mightnot be of some help with the seizures. (nicfranklin@bellsouth.net)

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