Sunday, July 22, 2012

New website

http://www.loveforlola.com/ Hey, folks. This is the new and improved version of Lola's website. Some of you will remember that this was the initial site that my brother created - since then, I started the blog, and now the wordpress site. Sean (my brother) amalgamated all three of them, and it looks pretty amazing. Soon, this site will become defunct, so come and visit us over at http://www.loveforlola.com/. I will try to update it - and he's linked me to twitter, youtube and flickr as well. Let's see how well I do with all this techno-jazzhands.

Sunday, February 12, 2012

Fly-by



Here's a picture from today. Lola rarely smiles for the camera - so of course we're loving this one! We're hanging in here with the med wean - some good day, some awful ones. We're trying to "mix things up" a bit - she gets really angry when she gets bored. Last week Deannie took Lola swimming twice with her pre-school classes, and to the zoo on Friday. Lucky girl!



Sunday, January 15, 2012

Bring on the Good Stuff, 2012!



With Dora at ivig last week.

Readin' books - yes, it's upside down - she just wanted the buttons!


You have to idea how cool he is. Trying out his new racing gear.






We're back from Vegas, Grampa has returned to Ottawa, we're back to school and life's moving along. Lola's slowly adjusting to having one of her meds yanked, though she's had some rough days. We're seeing more of her "smaller" seizures - but that's to be expected while we transition. She's also put on a few pounds (now 23.1 kg) so we're cutting back her calories hoping to get her back at her fighting weight. As I type, she's in the bath tub, blowing bubbles in the water (another new thing for her - and pretty cool to listen to). She's been vocalizing more - in the tub especially, but also when she has something to put in her mouth - like her sippy cup or a toy. She said "butha" last night while playing with Liam - he was over the moon! I asked him if he still mentions Lola at prayer intentions at school and he said that he does. I asked what he prays for and he said "for her to get better." I said that maybe he should ask God for something more specific, and he responded with "I'm going to pray that Lola learns one new word." So he sees "butha" as his answered prayer, which is a good thing!


Lola's doing great at preschool, and has started to like painting! So cool! For the past couple of years, craft time at school has been a laborious task. She didn't like it at all, and fought most of the time. We always joke that Deannie did some lovely crafts (because we know that Lola would have been freaking out/protesting too much to finish the craft). lol. Lola has another friend at school named Akyrah and apparently they were inseparable this week. How awesome.


This has me thinking even more than I was before about schooling for Lola for next year. We have a few options....and I've been going nuts considering them. Public (at a school that's geared towards special needs/medically involved children) - is this "too much" for Lola or am I kidding myself? She does well at her preschool (typical kids). But then I think about the amazing facility that this school has, with an understanding, caring staff - snoozelen (sensory) room, swimming pool, on-site physio/OT/speech/vision. These are things she still needs.



But who doesn't dream that their kids will attend school together? Liam and I talked about it last week, and he begged me to let Lola go to his school. Inclusion, when done properly, can be an incredible thing for the special needs child, as well as his/her peers. Doing it properly takes time, money, and a deep understanding for what each child requires. I worry endlessly about funding cutbacks and what it means for Lola. She requires constant supervision, and a one-to-one ed. assistant. Someone needs to be an arm's length away (if not holding her hand) at all times - and I don't think I'm being a helicopter mom here. She could drop to the floor and hit her head, she could run off, she could pull the fire alarm! But still I dream that Liam can pop into her class to say hello, or to volunteer to read to Lola and her buds or to sing some silly narwhals song to crack them up. He's so incredibly proud of her. He realizes that she's different, but he doesn't care. He's never embarassed. Perhaps he's just not at that age yet - but he's pretty bright, and always aware.


We are also considering private school. Costly, yes - but we'll do whatever it takes to get her the education she deserves. I think we've got some big decisions on our plate. Of course Steve defers to me - duh, I teach for a living. I see what happens in the building where I teach, and it makes me fearful for the future of exceptional learners.


Anyway, off my soapbox. We'll figure it out. We have Kim advising us (Lola's "teacher"/IPP coordinator, and all around awesome person) and she knows her stuff. I know that Lola will end up where she needs to be. And hopefully not pulling fire alarms.



Saturday, December 31, 2011

Lola's getting the party started!







After Liam's Advent Celebration at school.











Happy New Year, everyone! (crickets...)


It's been quite a year of ups and downs, but currently we're riding an up. Lola's recovering from croup (down), but right now she's sassy, mischievous, and definitely full of beans (up) and ready to party. We had a nice, quiet Christmas with Grampa Ed, Uncle Sean, Julia and Leafy. We went to see the Festival of Lights Christmas night. It's been unseasonably warm here - like above zero. So much for a white Christmas - sure, there's some snow kicking around, but it's pretty gross looking.


We have so much to be thankful for as we approach 2012. Lola is slowly kicking seizures to the curb. She still has smaller ones throughout the day, but for now (hopefully for good) we are being spared the big, tonic/tonic-clonic seizures which leave her wiped out for the day. We haven't seen one of those since early November. Now that Banzel is fully onboard, we've begun the valproic acid wean - so far so good! We're just so amazed by our girl - and thankful for the good days. She's growing up so fast - all of a sudden, it seems. She still loves to snuggle, go outside (if anyone leaves the house without her, she melts into a puddle on the floor or screams and cries and stomps her feet.), play with her ipad, listen to music, watch Roll Play, youtube videos, and tons of Treehouse.

Liam loves having Grampa Ed visiting - they've played countless hours of Monopoly and various board games, and Liam has introduced Grampa to wii bowling and other video games. Liam's also teaching Grampa how to use his new ipad - he made sure Grampa had angry birds and a few other "necessities" for when he heads back to Ottawa. Riley loves being walked everyday and basically being spoiled. And Lola - what a girl - she has Grampa wrapped around her finger. She brings him books and sits with him/in his lap, and makes him chase after her as she goes from one bit of trouble to the next.....laughing the whole time. It's been a really fun visit.

Steve and I are heading to Vegas on Monday - I'm so nervous! We've never been away from the kids. Even though Grampa's here for Liam, and Dora's here for Lola - I'm trying not to freak out. It's only for three days - OMG THREE WHOLE DAYS WITHOUT THE KIDS?? Breathe....breathe. I'm sure I'll be fine once I'm there....


Okay, well Lola's been as naughty as possible while I've written this post in her room. She thinks it's funny to dump her humidifier on the floor and climb up on top of her play kitchen. She likes the part where I rescue her as she's teetering on the edge of disaster - that's funny stuff apparently!



Happy New Year! Here's to an amazing 2012 full of health, happiness and all the good stuff!






















Monday, December 12, 2011

Better Days...

I'm afraid to jinx things, but Lola's been doing quite well on the new med: Banzel. We will start to wean her valproic acid on Dec 23. I'm scared, but hopeful. It will be nice to have her on one less med. Speaking of that - we'll likely be able to lose carnitine as well. One less pill in the med container is always a good thing.
With the decrease in seizures, we see a sweeter, calmer, more "industrious" little girl. Okay, she's a bit of a troublemaker. In fact, last week she threw her tv onto the floor with Daddy a foot away from her. She puts her toybox on her bed, and throws her play kitchen on its side. She empties her closet every chance she gets. See....busy. Her mornings start out a bit rough - lots of crying following her morning bath. We figure it's a combination of a few things: not liking the transition from warm to cold, being tired (she usually naps after breakfast), knowing mommy's leaving for work, and adjusting to med changes. The last one is a biggie. So just for fun, here's a rundown of Lola's day:
6:15 awake - Mom feeds me breakfast in bed (bringing her downstairs into a bright kitchen, etc. wasn't helping her seizures any - now it's just a habit) along with my morning meds.
6:30 - I'm in the tub. If mom tries to distract me, I freak out. I know the drill. I hold mom's hand, she walks me to the bathroom, I lift up my arms and help take off my pj bottoms.
7:00 - I'm likely still in the tub. It's how I roll. I have a whole routine of mermaid stunts, etc. (It's pretty funny. I should videotape her while she's in there - in a bathing suit or something.)
7:01 - Now I'm crying, whining, and basically freaking out. Not sure why, but mom doesn't know what I want, which frustrates me more. I don't want to get out, and I'll move as far away from her reach as I can. But then I do want out. Or do I. At any rate, mom gets sick of the game, and out I get.
7:10 - I'm in my pink, fuzzy bathrobe in my room with mom. We're watching cartoons, and we have the lights out because I don't like bright things in the morning. Now the sound is bugging me so we turn off the cartoons too. I'm crying - no tears, but I'm mad about something. We snuggle, put some Adele on the ipad, and mom and I do some puzzles with the "whimsy" app. This calms me down.
7:30 - Dora comes into my room and we hang out for a while. Mom goes to work.
8:30 - naptime
9:30 - snacktime (BLT salad - yes, still on ketogenic diet)
9:45 - downstairs with Dora - she does some chores and tidies the kitchen while I'm in my chair.
10:00 - back up in my room. I like it in there. Lots of toys. Comfy bed with soft blankets and lots of pillows. TV playing all my favorite shows. My ipad. Did I mention toys? Oh yeah, and Dora's here - I love her.
11:45ish - lunchtime
12:30 - Deannie's here to take me to school! We go in her car and meet our friends. We do circle time, go to the dance studio and the mcdonald's playroom, we read books and play dinosaurs. Everybody loves me here. My teachers are Miss Candice and Mrs. Shelley. Deannie gets a workout keeping up with me - sometimes I like to pull the fire alarm.
3:30 - I say goodbye to Deannie and hello to Dora. I will see Deannie tomorrow afternoon. I love Deannie too - even though sometimes she makes me do work and things I don't want to do. She is awesome.
4:00 - I'm back in the tub. This time, I'm not crying when it's time to get out. I'm just playing playing playing. Flipping around, playing with drips of water, filling cups with water.
4:30 - Daddy's home!
5:00 - suppertime and Liam's home! Mommy will be home soon too. For the rest of the night we hang out, read books, play, listen to brother chat about his day, look at youtube videos on the ipad (I like the chipettes, brother likes the Narwhals song, so I like that one too. We like Kittens inspired by Kittens, and Evian rollerbabies).
7:00 - snacktime and meds. Now I'm snuggling anybody within a two foot radius and giving very big hugs and kisses. We're watching TV in my room.
8:00 - bedtime routine. I need my night night turtle (gift from Grampa Ed - it's a turtle that projects stars onto the ceiling), my music (ipod and speaker bear), my bunny, and my kitty (the most disgusting stuffed animal around - so nasty looking). Oh, and my mom. I really need her at bedtime. We like to snuggle and give kisses. About a million kisses. I don't like it when my mom rolls over and surfs facebook under the blankets. I pull her hair until she rolls back over and I put my arm under her head. More kisses. We talk sometimes. I am the most vocal at bedtime when everything's calm and I have no distractions. I say "mmmmmmm" and "mmmmommm" because I know it makes mommy very happy. We talk about my day, and mom asks about thirteen questions. She's very curious about my day. I answer in smiles, serious looks, and sometimes sounds or laughs. I'm getting tired now. Mommy says she loves me and that I'm her best girlfriend, her nubbington bear, and her potatobug. zzzzzzzzzzzzzzzzzzzzz
11:00 - Daddy's turn! After having a few hours off to watch tv and surf the web, Daddy's back to sleep in my bed for the night. He is allowed in here because he doesn't snore. Mommy, on the other hand, keeps me awake. Daddy is on seizure patrol for the night. Mommy watches us on the video nightcam, which is kind of creepy. I snuggle close to daddy because I'm pretty sure he likes to share his pillow. zzzzzzzzzzzzzz

What a girl.

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.

video

Sunday, October 2, 2011

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?