love for lola

Fly-by

2012-02-12T19:46:00.003-07:00

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!

Bring on the Good Stuff, 2012!

2012-01-15T06:29:00.004-07:00

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.

Lola's getting the party started!

2011-12-31T19:19:00.003-07:00

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!

Better Days...

2011-12-12T21:15:00.004-07:00

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.

Bah Humbug

2011-10-30T18:07:00.003-06:00

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...

2011-10-02T07:20:00.003-06:00

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?

Lola on Shaw TV

2011-08-28T14:01:00.000-06:00

I think this one works. http://www.pinkbike.com/video/212833

Video from Western Open

2011-08-28T13:56:00.001-06:00

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!

2011-08-28T13:52:00.001-06:00

Okay, and another post just got eaten - with pics and video links.... sigh.

Summer Update?

2011-08-28T13:39:00.006-06:00

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??

2011-08-28T13:20:00.001-06:00

this blog's killing me slowly with its inability to publish my posts...

Lola's Big Day

2011-06-16T21:55:00.005-06:00

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

2011-06-15T06:18:00.002-06:00

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!

2011-06-04T06:37:00.004-06:00

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!

for inspiration...

2011-04-11T21:23:00.002-06:00

I found this awesome piece today while surfing around - it's available http://www.etsy.com/listing/71249981/i-believe5-x-7 in this etsy shop - sadly, no delivery to Canada. Still an awesome quote though!

Waiting for spring...

2011-04-11T05:57:00.006-06:00

It's been a tough few months on the seizure front. And where the diet's concerned. The past couple have days have been a bit of a reprieve from the "norm" and that's been great. Amazing really.

So while we await the news of our latest labs and hope for some more tweaking of the ketogenic diet for our girl, we try to enjoy the good times when they come. She makes us laugh so hard when she's sassy. Naughty, actually. She's always up to something.

Lola has a new nanny, and she's amazing. The kids loved her from the day they met her. She is kind, hardworking, funny - and she makes the best banana chocolate chip muffins on the planet. Her name is Dora - so we call Lola "Boots" - it's a perfect combo!

We signed Lola up for ballet lessons, but her seizures were so out of control Saturday morning that we had to miss her first class. I was pretty choked. Anyway, hopefully we can string a few of these good days together so that she can attend this weekend.

Liam is so excited for his birthday party on Saturday - he and several of his buddies (girls too) are heading to the bowling alley for some Glow in the dark bowling. My friend, Brandee, is making his Lego Starwars cake - can't wait!

Fingers crossed that our "Spring" will arrive soon.

GRIT Conference

2011-03-16T07:10:00.002-06:00

I was asked, along with two other parents, to share our story at Lola's school conference. So I wanted to also share my speech on Lola's blog, as some of you might not know how we truly came to be at this place in our journey. It was not an easy talk to give, especially after hearing the stories of the women who spoke before me. I'm glad that I did it, but boy, was it tough. This picture was taken just before I spoke - this is Kim, Lola's teacher and IPP coordinator - and she is amazing.

Here it is:

"If you learn from your suffering, and really come to understand the lesson you were taught,you might be able to help someone else who is now in the phase you may have just completed. Maybe that's what it's all about after all... "Anonymous

When Paula asked me to speak today, she said, “Your story’s a little different than the others.” What an understatement! It’s a difficult story to tell, but I promise you that it has a happy ending.
We were blessed with two healthy, typical children. My son, Liam, was born in 2003, and Lorelai followed in 2006. Perfectly healthy, all milestones checked off at the appropriate times in the baby book. In retrospect, we were living the perfect life. Little did we know what was just around the bend.
In November of 2008, Lola had what we thought was the stomach flu. She threw up repeatedly, we gave her small sips of pedialyte and waited for it to pass. At 8 pm that evening, she suffered her first seizure. She was rushed to the Alberta Children’s Hospital where numerous tests were run, determining nothing. As we were being discharged the next morning, Lola had a tonic clonic seizure in my arms, in the presence of a nurse. I remember her being taken from my arms, and the room flooding with medical staff. She was whisked off for a spinal tap, where it was determined that she had meningitis. While we waited for other cultures to come back, Lola continued to deteriorate. She was started on IV anti-viral drugs while we waited. I remember the look on the face of the neurologist as she came into our room to deliver the devastating news. I was lying in the crib with Lola (picture that for a minute) as she told us that the cultures came back positive for HSV encephalitis, which carries with it a 70% mortality rate. She had a 1 in 1 million chance of contracting the disease. And then she got it twice.
We spent the next three weeks in the hospital while Lola was treated with anti-viral drugs. During that time, we were introduced to the Brain Injury Team, and started along our road to recovery. Lola was so feisty that some of the therapists had to administer their treatments from the hallway – hoping that their mere presence wouldn’t upset her too much. Within those three weeks, Lola’s recovery was miraculous. She re-learned to walk, and had recovered every element of her previous self except for her speech – all she would say is “Me?” in a questioning voice.
We were discharged home, and three days later Lola had declined substantially. We had taken her to the ACH twice, only to be sent home. They said she was just adjusting to her meds. When we finally took her back into emerg 12 hours later, she could no longer walk, eat, track objects, or respond to painful stimulus. We were re-admitted, and told that she had suffered a relapse. In actuality, it was not the same virus – rather, it was termed “acute demyelinating encephalomyelitis” - an unexplained, random “flare-up” that would leave our daughter substantially brain damaged, unable to hold up her head, speak, smile, cry, sleep, eat orally or sit up, and plagued with a movement disorder and extreme right-sided weakness/hemiparesis.
We were living a nightmare. The Brain Injury therapists became our friends, and we looked forward to their daily visits. They worked diligently, with little improvement from Lola. The movement disorder made things even more complicated, and the meds had brutal side-effects.
I decided that as long as we got to keep Lola, that we would get through anything else that was thrown our way. I remember the social worker at the hospital handing me a pamphlet for FSCD – and I thought, “This isn’t for us, is it? How is this happening? Doesn’t she know we’re the million dollar family?” I thought Lola would bounce back like she did the first time, even though many neurologists would tell us otherwise. I have declined viewing her MRI – I don’t think I ever want to picture my daughter’s brain as anything other than perfect. I don’t want to subconsciously place limits on her because of a picture that’s ingrained in my mind. I know the injury is substantial, and I know that it’s predominantly on the left side, and that it affects the brain stem. Beyond that, I can pretty much figure out that it’s “not good” by the pathetic, pitying glances we’re given whenever her MRI is discussed. But they haven’t factored in Lola when they look at that MRI. And the power of Lola is incredible.
We were discharged with a list of meds, a feeding pump, crates of pediasure, syringes, emergency seizure meds, catheters, a bath chair, a tumbleform chair, and a kid-cart. We met with an OT who discussed having a wheelchair ramp installed on our porch, as well as having our stairs adapted to our second floor. We shook our heads in disbelief. This couldn’t be our life.
We had a neurologist who uttered the term “poor prognosis” to us while we were in the depths of despair. We cried, and when the neurologist left, one of the older nurses came in and gave us supreme heck. She said, “Don’t you let her decide your daughter’s fate. She has no idea – it’s just a best case scenario. Get up, have a drink of water, and forget everything she just said. Allow only positive words to be spoken about Lola in her presence and don’t believe the doubters.” And that’s what we did. I’m sure that the medical professionals on Lola’s team think we’re ridiculous – when they tell us horrible scenarios, we smile and nod and think, “But you don’t really know our daughter.” She’s a medical mystery, and that’s something that’s on our side. They’ve never had another Lola, with the same diagnosis, with the same outcome. Are we naïve? Sure. But we prefer to think of ourselves as hopeful. We’ve got nothing else. And I don’t think being realistic in this situation would help our daughter. Our nurse practitioner requested a brainstem response test to determine if Lola could see and hear. The neurologist responded with, “What’s the point of running that test. We know that it’s going to be delayed.” Many who worked with Lola believed that she was blind and deaf. Well, lo and behold, the test came back normal. Every now and then, we encountered an angel in the medical profession, who truly believed in Lola. We had an optometrist appointment after we were discharged, and I’d never met this doctor in my life. I must have looked defeated, though I usually do a good job of masking it. She said, “They really don’t know what these kids will do, you know. Even the neurologists are scratching their heads half the time. It’s all just a guess based on the information they have. I think Lola’s got a long way to go.” We also had a physiotherapist who worked with Lola in Ontario while we visited. She got Lola to stand, with much support, and she gave us the gift of hope that day. I always try to extend this hope to other parents who may be walking a mile in my shoes – I often find them online, and I try to be the voice of hope in their lives. Late at night, after the kids are asleep, I find myself online researching. I stumble across blogs for parents of near-drowning children, and I continually find myself drawn to reading their stories. My husband thinks it’s depressing, but I am constantly finding out about new types of therapies, stem-cell research, and even ipad apps by reading about these children’s stories. It helps me to know that there are children who are fighting as hard as Lola is to gain their tiny inchstones.
I recall being in an appointment at the Seating Clinic at ACH – I had picked out several “adaptive strollers” and I had the pamphlets with me. The seating specialist smiled and nodded and said, “Surely you’re not going to send your daughter to school in a stroller.” (Lola was 3 at the time) I said, “No, of course not. She won’t be needing a wheelchair or a stroller by then. She’ll be walking.” The woman looked pityingly at me. When they showed me the wheelchair that my daughter would be eligible for, I gasped in shock. It didn’t help that they only had a really big, bulky chair to show us – the smaller ones that would fit her were being used elsewhere. I said, “I wouldn’t put my grandfather in that thing.” It was an incredible day when we returned the loaner Kid-cart – while Lola strolled along beside me, holding my hand. We received Lola’s standing frame the day after she began to walk. Navigating the ins and outs of equipment loaning/acquisition was interesting, to say the least. Lola was with me when I returned the stander to the hospital as well. They said, “We just had this built.” I said, “I know, but isn’t it great – we don’t need it and some other child can benefit from it.” They looked from me to Lola and shrugged.
Another victory was having Lola’s g-tube removed. By that time, she had been eating and drinking orally for over three months. When it was placed, the doctors told me that it was likely to be there for a very long time. Within 8 months, it was removed.
The first time that we met Kim and Deannie, Kim walked right past Lola to find the “other little girl.” I looked at her confused. Kim said, “Is she upstairs in bed?” I said, “No, that’s Lola.” Kim’s hand covered her mouth as she gasped – completely in disbelief. In the few months that had passed since GRIT received Lola’s intake assessments from the folks at the hospital, Lola had learned to sit up, roll, crawl, and was now cruising furniture. Kim and Deannie were both pleasantly surprised that the little girl smiling at them from the edge of the couch was indeed the Lola they were looking for.
We always have a good chuckle at Lola’s IPP meetings, as the women on Lola’s team cross out, delete, edit, re-word, and smile, as they revise Lola’s goals – for the 4th or 5th time. Lola is an enigma – make no mistake. She is constantly changing and progressing –despite her seizures - and you really never quite know what to expect. Nobody at GRIT puts limits on Lola – and I love that. When she aims high, they aim just a bit higher. And they love her and encourage her every step of the way. Somehow, I know that they’ve experienced their fair share of miracles along the way.
What does our life look like now? A year after Lola’s brain injury, she developed seizures. After a year and a half of trying and failing several meds, we are now on the ketogenic diet. It requires hours of preparation daily, close monitoring of her blood ketone levels, vitamin intake, etc. And we’re not even convinced that it’s doing much to control her seizures, which is frustrating. The seizures are a constant in our life, and we have tried numerous meds, in combination, and also receive ivig every three weeks, which is intravenous immunoglobulin – the pooled blood product of 3000 donors. The intent is to supercharge Lola’s immune system in the event that the seizures are auto-immune related. Each night, either my husband or I sleep with Lola because of her seizures. She has a helmet which she wears when her tonic and atonic (drop) seizures are really bad. Living with seizures is a nightmare – on a bad day, she can have up to 30 per day. Many of the things that we try are a “shot in the dark”. We are currently discussing our next step with neurology – there is a possibility for a right temporal lobe re-section (and that’s her “good side” so we’re terrified).Well, it’s never going to be easy. We are currently transitioning from a less-than-ideal live-in caregiver situation to a hopefully much more positive one. My husband and I work full-time, and Lola is with a nanny for a good part of the day. Lola has music therapy once per week, and of course all of her therapies through GRIT. She attends playschool two mornings per week with Deannie, her DS, and is doing really well. We try to balance all of Lola’s needs with those of our son, and we fail miserably.
We are trying to find new ways to interact with Lola, and the ipad definitely helps in this capacity. Lola can play with her brother and “communicate” with him in a way that we had never imagined. It’s very exciting. If we can get her to stop turning it off every 30 seconds, imagine the possibilities. We’re trying to get out of the house more, but it’s tough. The seizures and diet further isolate us. I often feel like we’re the only special needs family in Airdrie – which Deannie assures me we’re not. I often say, “How come I never see them out in the parks, at the school?” I guess I’m just not looking hard enough. I long to connect with other like-minded parents who “get it” – who understand that seizures aren’t a big deal, and neither are g-tubes, glasses, AFOs, wheelchairs, trachs, etc. etc. I still get sad when I see other little girls who remind me of the perfect life we once had. But then I look at Lola and I’m reminded that she’s still here, and that she’s still fighting with everything that she has. Then the sadness fades into something else: hope. At 4 years, 8 months old, Lola has now been brain injured for as long as she was previously healthy. That’s difficult to swallow.
Lola is a feisty, sassy, curious, loving wee sprite. I love her personality and the way that she approaches life – full on. She walks, runs, walks up and down stairs, plays, reads books, loves music, loves her brother, makes us laugh, gives really big kisses and hugs, and dances. She screams like a pterodactyl caught in the wheels of a car, and throws really big tantrums. The absolute best part of my day is when I snuggle into Lola’s little pink bed, and she hugs me tight, puts her cheek against mine, and says “Ma” almost like a sigh. She doesn’t say it any other time. It’s the most amazing gift.Without the help and expertise of our team at GRIT, I don’t know where we’d be. They are our lifeline, and our link to integrating Lola into everyday life – things that other littles get to experience. Swimming, riding a bike, dancing, playing with friends – who doesn’t want those things for their child? I can’t thank them enough for everything that they bring to our life. They get to experience the Snuffleuppagus Effect numerous times with Lola – where you think you’re imagining things when she does something new (Deannie swears she said “alphabet” plain as day a couple of weeks ago). Lola has regained the use of her right hand, which in itself is incredible.
So I promised you a happy ending – and here it is – in pictures. Our life doesn’t look like we thought it would – but the rewards are so much bigger than we ever thought possible. Lola has taught us patience beyond belief. She has made us prouder than we ever thought possible. She is truly a miracle. I’ve grown so much along this journey with her. We quote William Shakespeare on our blog, and it so accurately depicts our Lola “Though she be but little, she is fierce.”

Video - Mr. Right in action

2011-02-13T19:09:00.004-07:00

I have no idea what she was doing with this jacket - she played with it like this for over an hour!

You can see her using her hand from time-to-time though!

Mr. Right...

2011-02-12T16:30:00.002-07:00

Our big news this month is that Lola has found her right hand! Yay! She's not 100% with it yet, but she is using it all the time to help carry big books and toys, her sippy cup, etc. Wow, what a miracle! She hasn't used that hand in over two years - neuroplasticity at its finest! We're pretty excited about it. Finally, Deannie got to see her use it this week - she'd been hiding her talents up till now.
Another trick is to walk down the stairs while holding onto the railing. She used to scoot down on her bum - safe and easy. The problem is that our railings are on the right side. So she will try to cross her arm across and hold on with her left hand - which is a problem. We're working on it! She is alternating feet when going up the stairs as well - pretty cool!
Seizure-wise, we're not seeing the miracle we had hoped - at least not yet. The diet's restrictions are draining on us. I spend easily an hour each day preparing her meals - before I leave for work in the morning, I pack Liam's lunch, get his breakfast ready, measure out Lola's breakfast (scrambled egg,cream,butter,raspberries,bacon, "juice"), then measure out and pre-pack Lola's snack for school (bacon, lettuce, tomato,cucumber,butter/cream as dressing), her lunch (a variety of things), her afternoon snack (see a.m. snack), and her supper. It's a lot. We've tweaked the diet ratio to 3.25-1 as per Lola's dietician. We'll see if there are any changes.
We're bored of this weather, and of feeling stuck in the house, in a rut, in our lives. The days and commute are exhausting. We're waiting for spring like everyone else. Liam is finishing up indoor soccer, and is having fun at gymnastics. We'll be signing him up for baseball in the spring as well.
Steve says that Lola's up from her nap! Gotta go!

Slow and steady...

2011-01-22T17:01:00.004-07:00

We're still getting the kinks worked out of our new regime with the diet. We have seen a reduction in Lola's seizures, for sure, but it's not 100%. Will it ever be our cure? Who knows? We are hopeful, for sure. So everyone asks, "But what can she eat?" Don't worry, she's eating just fine - her portions are smaller than she's used to, but she's eating a variety of fruits (raspberries, blueberries, mango, blackberries, etc.) and veggies (swiss chard, romaine lettuce, carrots, asparagus, broccoli), lean meats, and even a bit of pasta (shiratake noodles/yam noodles). For the mostpart, she's doing fine with it. She endures the needle pokes when I test her blood ketones, she's slowly getting used to being without juice, chocolate milk, cheerios, and yummy stuff. She's still crying at the end of her meals, to let me know "that wasn't enough, mom." It breaks my heart, but I know that it's doing her good. She isn't losing weight, or wasting away, don't worry. Check out the pics - she's doing just fine.

We've had some sort of superbug invade our home. Everyone's been sick. And not just the run of the mill cold/flu. It lingers, and morphs, and reinfects. I don't get it. At any rate (touch wood), Lola and I are feeling better - the boys have wicked coughs, and I'm sure that it's triggered by their asthma. sigh. Liam had to leave soccer after only a few minutes today because the exercise made his cough worse.

The weather has been insanely cold this January, but we got a bit of a reprieve this week. So Lola and I went out for a little walk to get the stink blown off of us.

....just whispering....

2011-01-12T21:17:00.002-07:00

......don't want to jinx anything, but Lola has had NO seizures today. I can't believe I'm writing that. Every morning for nearly a year, we've watched Lola have a massive tonic seizure in her chair while waiting for breakfast. Sometimes she hits her face on the table, the floor (if she's walking at the time), or on some other hard surface. It's devastating - you never get over the horrible feeling in your stomach while you watch helplessly - trying to sooth her with your touch, and with your words. Today, we waited...and we watched....and we waited....no tonic seizure at breakfast. Well, it would surely come during playtime with Deannie. Nothing but a few quick "episodes" (which are also a type of seizure, but they don't render her exhausted for the morning) that she quickly recovered from. I am in complete shock. I don't want to get too excited, but seriously? I want to scream it at the top of my lungs!

Hello 2011!

2011-01-09T08:14:00.005-07:00

This is Lola's friend, Abby May. She passed away Thursday evening after a lengthy battle with mitochondrial disease. Many prayers for her mom, dad and brother as they mourn her loss. Such a sweet girl.

Well, this will hopefully be the year that we get a handle on Lola's seizures. We've got our fingers and toes crossed.

We are just home from our inpatient (or "impatient") stay at the Alberta Children's Hospital to initiate the Ketogenic Diet. It was rough. First, it's RSV season, and PACKED on the unit - not a bed to spare - so we were at first sharing a room. sigh. So Lola spent a couple of days just trying to run to the other side of the room, dive under the curtain, etc. Second, she was battling a cold. Third, her seizures were brutal. Fourth, she had to have IVIG as well as an EEG all while I was trying to do the Keto training with the dietician.

Anyway, we started out the stay with four meals of "formula" - poor Lola. She was not happy at all. I guess in a way having a cold was a blessing because she wasn't very hungry anyway. After those meals, they began to introduce the Keto meals - problem is, being in the hospital, they weren't exactly gourmet standard. We're talking a teaspoon of applesauce, butter, mayonaise and a piece of cheese. Poor Lola! Anyway, she did okay. We finished off the stay with a 9 hour EEG - she had a ton of seizures while we were connected, which in neuro land is a good thing. The last EEG we had showed no seizures so how are they supposed to know what's going on? Our neuro came in to discuss the EEG with us and he gave us some surprising news - the seizures were coming from the RIGHT temporal lobe - Huh? But her main injury is on the LEFT?? Anyway, this is a good thing in neuro-land because it means that we would have the opportunity for surgical re-section of the right temporal lobe at some point down the road if the diet doesn't work. So we're scared, but hopeful that at least there's another option - and that at least they can pinpoint one area (rather than several) that is causing these debilitating seizures. And that's about all we know. We were happy to see our old pals on the unit - so many amazing people who care so much about their little patients. We were lucky to have Grama and Grama visit to help with Liam - they are heading home today and we'll miss them tons. Liam and Lola have had lots of playing, checkers, crosswords, stories, etc. We were also very happy to have Grampa Ed visit before Christmas - there were so many games played, lights seen, hot chocolate drunk, and much spoiling done. We are blessed to have awesome Grama/Grampas/Papa in our lives.

Lola's starting to wake up so I'd better not be late with breakfast! False alarm.

On a very sad note, late last week, Lola's little pal Abby lost her fight with Mitochondrial Disease. She was a very sweet, feisty, beautiful, determined little angel. Lola has known Abby since her first stay at ACH - and they also went to "school" together at GRIT. We are devastated for the Halford family, but know that Abby is in a better place. Hug your kids tight.

Got her sights on Santa!

2010-12-13T20:48:00.005-07:00

Lola is once again fascinated with the fat man in the red suit. I just lost a huge post so forgive me if I just give you the highlights. Lola got to see Santa at my staff party and she did great! She walked right up to him, sat on his knee, looked at the camera for pictures, and held her gift. When we got back to our seat, she opened her gift and seemed to like it (it was a little puppy in a pet carrier with veterinarian supplies). Liam was a great big brother and helped her back to our seats. We got a few cute shots.

Grampa Ed is visiting and Liam is loving the attention, the rides to and from school, the chats, the fights, and most of all, the game-playing. I think these two have played every card game known to man, along with lots of Battleship, Candyland, Hang-man, ipad, etc. etc. Lola has given Grampa Ed lots of hugs and grins, and has enjoyed having him read to her or play ipad. Fun stuff.

Our appointment with the ketogenic diet people is on Wednesday. That's right - this Wednesday. Just another hoop to jump through. We should be admitted early in January - though we've been "next on the list" for months.

seizures suck

2010-11-16T04:34:00.003-07:00

Liam and his pal, Abby - who lives across the street.

This bunny's sick of trick or treating and wants outta the bunny suit.

Where's the good stuff?

There. I've said it. And waiting and being jerked around by a medical system that doesn't seem to care really bites too. We've been bounced to our third neurologist - and are still waiting to start the diet. Though we were PROMISED by neuro # 2 that we would be inpatient a month ago, our phone calls were not returned, and we didn't get that wish. A cog in a wheel. The worst part, is knowing (since June) that her meds weren't working, and that this diet could be a holistic, miraculous cure for her seizures, and not realizing how long we would have to wait to start it. For nearly six months, we've been jumping everytime the phone rings, hoping it's "the call." We're beyond frustrated. Meds aren't working, ivig isn't doing anything anymore either, and Lola continues to seize several times each day. It sucks to reprimand Liam for (god forbid) making a noise, dropping a spoon, or even laughing too loudly, as it causes his sister to have a seizure. Have you ever seen someone experience a seizure? I'm sure you can imagine it's not fun to watch - especially if you're seven.

So there you have it. Vent over.

Aside from all that, Lola continues to press on - move forward - change and grow. She's doing well at playschool, and has been doing lots of stuff in Physio (stepping over toys, transitioning between surfaces outdoors without falling, etc), OT (accepting hand over hand guidance, potty learning, etc), and Speech (saying "all done" "more" "duck" "quack" and sometimes "mom"). She's got quite the sense of humour, and loves anything to do with potty humour, loves to be teased and to play games. She continues to love music and dancing and will spontaneously bust a move to a commercial - it's pretty cute. She's begun to isolate her index finger to point, which is fantastic for using the ipad. She loves the ipad, when she can wrestle it away from Liam. She knows it's hers, and will carry the case for it around and try to locate the actual ipad. Since she's the biggest toddler on the planet, she can reach things on the counter no problem. She's frequently in destructo mode - she cruises around the kitchen pulling random things to the floor, emptying the garbage, and basically creating mayhem wherever she goes. Last week Liam and I were in the living room and heard a loud crash...and a cry. We ran to the kitchen to see that Lola had pulled a huge ceramic cannister of flour onto her little foot! I thought she would have broken her foot - or at the very least, the thing of flour. Nope. Sure there was flour all over the kitchen, but she was fine after a snuggle. Crazy kid. She loves to run full speed from one end of the house to the other - not sure why, but she does it several times a day.

I think that's about it for Lola.

Liam's doing indoor soccer, trying to follow the rules at school (read: leave his Pokemon cards at home so that they don't get taken away...), and learning to realize that rules at home are just as important. Seven's a strange age. He has a girlfriend at school, and he loves her to death. He frequently brings home little notes, or will tell me the little jokes they created together. It's pretty cute.

Enjoy the Halloween pics - the magician and the bunny. Liam performed card tricks upon command, as he quickly realized that doing so would cause him to get double the candy. Lola climbed into the wagon as soon as we got outside, and was content to ride along while brother collected the treats. Liam sold me his candy for 20 bucks, which he promptly spent on Pokemon cards, a harmonica and a replica of a bear's claw. (after the time spent in the dentist's chair this fall, we didn't need him eating all that candy - I took it to school and gave (most of it) to my students.

Who's a big girl?

2010-10-21T11:38:00.003-06:00

Lola has peed on the potty five times in the past two days - 4 yesterday, and she went first thing this morning.
I am in shock.
Totally and completely.
I will be heading out to the store to buy the cutest, most awesome gotchies I can find.

YAY FOR LOLA!

Family photos!

2010-10-21T06:15:00.004-06:00

Lots of stuff going on lately - don't know where to start.

On Thanksgiving weekend, our awesome neighbour, Denise Landry, took some photos of our family at a nearby park. A momentous occasion for many reasons, but most importantly because we've never had a family photo taken. And certainly not a professional photo! We have a snap from when Lola was born, and another handful of pics taken when we visited the McGraths a few summers ago. That's it! Anyway, it was a great experience, and I'd highly recommend Denise - not just because she's super nice and talented, or my neighbour. She captured some amazing memories for us - and it's so incredible to have a view into Lola's recovery in such a vivid way.

Lola continues to do well in her therapies, and with Deannie at playschool. Today is her Halloween party, and she's going as a bunny. We put her in the suit and laughed so hard as she marched around the kitchen. She reminded me of the kid from A Christmas Story - the suit is that ridiculous. Of course there will be pics. Liam will be a magician, and he has a very big bunny to pull outta his hat!

New Lola tricks:

- using her right hand - she continues to try to pick up very large/heavy objects using both hands. It's really exciting!

- snapping her fingers - now, of course, this will only add to her diva-ness - as we jump to get her whatever she wants - but that's okay. She knows the snapping is funny and cracks up while she does it.

And the best news - we finally got the call to start the Keto diet. It will be next week or the week after. What we know for sure is we are next on the list, so as soon as they have a spot for us, we're in! I'm nervous, excited, and eversohopeful that this diet will be a miracle for Lola. So we'll be inpatient for 5-7 days to initiate the diet. It involves so much calculating that I'm a bit concerned I can do it - but I'll have great support from the dietician.

2010-09-29T19:51:00.002-06:00

Still a Lefty, but that's okay...

2010-09-29T06:14:00.002-06:00

Lola used her right hand yesterday!! She bent over to pick up a piggy bank, which was heavy, and her right hand helped with the lifting this time!! I was so excited I was yelling, "Steve, Leni! Come look!" She did it a few more times after that. Usually, you can see that her right hand "wants" to help out - it does this kind of jerky movement in the general direction of what she wants to do, but then nothing really happens. This time it was so natural - she just put her hand on the toy and brought it to me!

Fall is here!

2010-09-25T15:07:00.003-06:00

Lola has been doing really well at pre-school and Deannie always has good reports for us. She's made a few little friends, has done lots of dancing and playing, and has even made some crafts. We're so happy that she's going to pre-school and doing "normal" things with other littles her size (well, they're likely smaller than she is, considering she weighs 20.5 kg (times that by 2.2 to find out the lbs). She seems to have turned another corner - things just seem to be falling into place. She can now climb the stairs alternating feet while holding onto a toy/doll/book. She just seems more "with it" - she answers you right away, and does what you ask her to do. She has a few words and sounds, but somehow she lets you know exactly what she wants. She still gets really frustrated when we don't understand her, but she's improving little by little.

She just had her ivig yesterday, and it was a rough go. Four pokes, and they finally got the iv started - not fun. Still no word on when we're starting the keto diet. Waiting patiently.

Back to School!

2010-09-09T06:50:00.003-06:00

Lola all ready to go for her first day of school. She's mad because she had to get her hair done.

This is Deannie - taking Lola to school. It's a great shot because Lola just conquered going down stairs like this this summer. Check out her high-top sneakers that Papa got her!

I love this picture for so many reasons. This is outside the hospital last Friday after Lola's ivig treatment. We've never stopped to play here before, but today was gorgeous so we did. I remember looking at this playground, watching kids play on it and feeling so upset because my child was too sick to play. Well, miracles happen, and here she is!

Liam with his big backpack on his first day of grade two!

We take the same picture each year - the tree's growing and so is he!

It's that time of year again - where the crazies set in and the rat race starts up again. Back to school. Liam's settling into grade two nicely, with his girlfriend (finally) in his class. Although they got separated for "chitchatting" they still get to play together, which is fun. He will be starting indoor soccer shortly, which will help him burn off some energy.
Lola started back with her program at GRIT this week, with her Developmental Specialist, Deannie. Deannie is so great with Lola, and I'm excited for all the new experiences they'll have this year - because they're heading to preschool! They went on Tuesday and Lola did great! She read books, ate her snack, played, then listened to a story! I'm so proud of her.
We're still waiting to start the Ketogenic diet - we saw the neuro who oversees the diet, did our intake dietary report/food diary, and had our labs drawn at Ivig on Friday. Now we're waiting for the call and we'll be staying at the hospital for a week to get things started. I don't think Lola will enjoy being inpatient again - I'm dreading it so much. This diet's going to be tough on her for a bit - but if the end result is fewer seizures and less meds, we'll do whatever we can.

The race that Steve planned in Golden (Western Cup at Kicking Horse Mountain Resort) was a huge success. He worked so hard to plan that event, and it all paid off. Lola's account got a boost to pay for her music therapy, as well as some developmental/physio tools that we have on our wish list (we're just deciding which ones to get). Her biggest thing - she'll be getting an ipad! How exciting! I've been doing so much research on communication and special needs apps that will help her to find her voice. It's going to take us some practise to figure it out though, no doubt! Anyway, we are so thankful for the volunteers who came out to support Lola at the race - especially Theresa, Gayle, Holly, Doug, Tenzin, Thuptin and everybody else who was lucky enough to stay at our house on the mountain. Now if only we owned that sweet place. ha. We're already talking about next year!

Update on the quest for sleep...

2010-08-20T07:07:00.002-06:00

She slept all night long. In her own bed. By herself.
Steve said, "I hope she's okay" to which I replied, "Don't say that.Don't say that.Don't say that." all the way down the hall till I found her still snoring away. Thank God! Talk about panic.
This girl's a mystery. Why would last night be any different than any other night? We went for a wagon ride, had a snack, laid down with her till she fell asleep - happens in a similar fashion every night. Maybe it's because it's raining - and who doesn't like to sleep when it's raining? Let's hope this is a new trend - because I could sure get used to sleeping more than an hour at a time. The other night I got 5 straight hours and thought I was a new woman. What would 8 be like? And more importantly, what would the impact be on Lola's seizure activity if she wasn't tired all the time? That would be the best part...

New look and some tough love...

2010-08-19T07:56:00.003-06:00

Okay, so I realize this background's a little busy, but I stumbled across it this morning and it's called Lola - so yes, I had to add it. You'll get used to it. Hey, it may keep you awake!

So Lola's in boot camp this week. We've got a problem with her sleeping. Steve has been sleeping in Lola's room, in her single bed, with Lola. There's the first problem. Steve's not a small guy, and Lola loves to put her back against the wall, and jam her feet into his spine. All. Night. Long. Did I mention he's been staying with her since January? Not ideal. The reason he's been sleeping with her is because she was having seizures in the night. How could we just tuck her into bed for the night and go down the hall for eight hours to our bed? Anyway, now she's not having seizures at night, and we all need to get some sleep. When we were on the island, she slept horribly. When I woke up one morning to find Steve had slept on the couch all night, he told me that my snoring was so bad that he had to leave. Me? Seriously? Anyway, so me snoring in her face can't be helping her out in the sleep capacity either (sometimes I sleep with her to give Steve a break). To top this all off, she's spoiled. That's right...spoiled. We attend to her every whine, whimper, and yell. We know how frustrated she is having such limited communication skills - it's got to be rough. So we jump whenever she makes a noise..."Do you want a drink? Do you want to go outside? A snack? A book?" Yeah. Repeat this all day long. So at night, this continues - we don't want her to cry in her room alone. So last night, we started operation tough love. Lola slept from 9 until 1:20 - then she pounded on her door. I didn't go in....yes, it was rough. Remember doing the same thing with your child when he/she was a baby? The whole cry it out thing? Well, it's just as bad doing it when your child is four. And has a seizure disorder. And can't tell you why she's up. sigh. Anyway, she banged on her door for about 20 minutes, then I heard nothing. I waited a few minutes, then stealthily (is that a word?) crept into her room. Lo and behold, she was asleep back in her bed! She didn't collapse in a heap at her door. She did the smart thing and went back to bed. She did the same thing at 3:30. At 5 I sent Steve in when she woke up and he stayed with her until 7.
So that's how day one went. Not bad?

Backyard Lola

2010-08-18T19:42:00.003-06:00

Check out that stair-climbing form! Holy smokes - talk about stride!

Yeah, so she has two sets of bangs - we're growing some out. Don't judge me.

I'm going to have to zoom in on this one because it's super cute. I'll see what photoshop or something can do for me.

Missing Bubby...

2010-08-12T10:04:00.001-06:00

Liam is having the time of his life - truly the best summer ever. First he got to hang out with Grampa Ed and go to the zoo, science center, and have every second of his day occupied with things that he wanted to do - then he spent a week in Whistler with Daddy - climbing walls, bike parks, hot tubs, gondola rides, movies - see a pattern? From there he went to stay at a cottage with all of us plus Aunt Pubba, Uncle Lipper, and Zac and Jared (who are the coolest kids ever according to Liam). After ten days of starfish, crabs, fishing, paddleboats and swimming, he flew to Ontario with the Lippers. He spent a week swimming, going to the beach, being spoiled by Grama and Grampa - playing chess, going to movies, swimming, learning to tie his shoes, and eating ice cream cones, etc. Now he's at Camp Olympia, which is a sports camp that I spent many a summer at as a kid - it is an amazing place in Hunstville, Ontario, and currently several members of my family spend a week (or the entire summer) each summer coaching at the camp (Grampa, Grama, Uncle Daryl, Aunt Faye, Uncle Lipper, Aunt Pubba, Uncle Mike, Trevor, Jared - with Chrissy and Kelsie working all summer as counsellors). Liam is having a blast - he's doing Baseball this week, and his coach is Uncle D. He's enjoying running from place to place, getting to go to the Tuck Shop three times a day ("and you don't even pay any money - I just say "Jared Lippiatt" and I get whatever I want!"), ringing the bell for dinner, playing badminton, watching movies, hanging out with kids his age - heaven for Liam. He doesn't miss us at all! Lola, on the other hand, misses Bubby terribly. Whenever we say his name, she freaks out and cries. This morning, she went into his room (usually off limits...but we're trying to air out the paint smell) and put her face down on his bed - she stayed there for about a minute, then sighed deeply, got up and walked out. So sad! She'll be happy to have him back.

While Liam's been gone, I decided to spruce up his room. And by "spruce" I mean "gut". It took me a day just to clean and sort every little piece of crap he'd collected. He now has a cool bike themed room, which makes Daddy a wee bit envious. We're waiting for the pics of him on his bike in Whistler to be developed, and then we'll frame those and hang them by his bed....then it's done! Pictures to follow once we get the photos hung.

Lola's had a good week. Her big seizures have disappeared (almost afraid to say that) - she's still having drops, but they are less intense, and usually following/preceeding sleep. She's sleeping better at night too, which could help too. She goes for ivig tomorrow - hoping it only takes one poke. Lola's been working on going down stairs on her own, or with a little bit of help. She now walks downstairs holding onto the railing, or onto my hand. She's been working really hard on this skill - she's getting there. She's also started to use her "helper hand" in a more purposeful manner. She's always used her right hand to support her weight, to help her climb on things, etc. but she won't use it to read a book, hold her cup, etc. Lately, she's been trying to read books standing up, etc. and we can see her right hand sneaking over to help - it's amazing to see!

Steve has been spending hours each night working on the Western Cup (aka Lola's bike race) - it's going to be quite an event. We will be heading up to Kicking Horse on August 26 for the weekend. Steve has arranged for the event photographer to spend some time photographing Lola, which is so cool. She also has a photo shoot with Uncle Sean next week - in the canola fields. I hope she cooperates!

So that's what we've been up to. We miss Liam so very much, but we know he's having much more fun in Ontario than he would be here. sniff.

The Life of a Moviestar....

2010-08-02T17:04:00.001-06:00

Back from the Coast!

2010-08-02T16:45:00.000-06:00

We did it - we survived a plane ride (just me and Lola), a car ride, then a ferry ride, another car ride - before arriving at our final destination on Vancouver Island. The flight was interesting - I thought it was a good idea to put Lola in her carseat on the flight - wrong - so little miss seatkicker just had a closer shot to the middle of the guy's spine who had the misfortune of sitting in front of us. Also sitting in front of us was the President/CEO of Westjet. What's funnier about that is the line-up of people who came up to complain to him about this that and the other. Seriously, life's too short. Anyway, Lola was pretty unhappy most of the flight. I shared her misery because as we were going through security, they decided to take my shoes and undo my pants (because I know I look like a coke-addict/unibomber - but seriously) - then Lola decided to take off through the airport. My pants almost hit the ground - never wearing those baggy cargos again! The woman was like, "Uh, you can't leave yet" as I took off running after a screaming Lola. Sigh. So once I got her into her stroller, carseat hooked onto the back, carry-on bag - oh yes, and once my shoes FINALLY came through the x-ray machine - I think I was sweating bullets. Steve and Liam met us at the other end and we bolted to meet the ferry - the one we wanted was full, so we enjoyed a delightful two hour wait on the hot tarmac.

We got to the cottage and got set up and waited for the Lippers to arrive. They had a hellish 12 hour journey to get there too. Anyway, it was an amazing week - kids got to fish/swim/play in the sand/collect starfish and have fun. Lola thought Stella (my sister's puppy) was pretty funny - got some cute shots of those two.

Leaving on a Jet Plane!

2010-07-22T22:44:00.000-06:00

That's right - Lolly and I are heading to Vancouver Island to meet up with Liam and Steve, and also with Pubba, Uncle Lipper, Zac and Jarebear. Can't wait to see these guys! I can't wait to park myself in a lawnchair and watch Lola play. I can't wait to see the kids explore the beach/ocean again - Liam has his net all ready for catching crabs and starfish! (Don't worry - he lets them go when he's done checking them out.)
So we're praying for a smooth trip for everyone - the Ontario gang has to take a car,plane,ferry, then another car ride. I'd better have some ice cold pops ready for them upon arrival!

Oh yeah - Lola had her ivig again today. It was brutal. The nurses had their hands full in there, with many difficult iv starts (lots of screaming, lots of waiting). Lola decided that she wanted to leave - problem was that she had about two hours left to go. Nothing was distracting her and I thought I'd lose my mind. Anyway, we decided to run it quicker for the last little bit just to save everyone some misery - poor Lol. While we were waiting at the very end, we got to leave the unit and we ran into Doods and Lani. They are so sweet to Lola - and she was really happy to see them (even though her mood was irate for most of the day) and gave them big high-fives. Just them - nobody else. That's my girl.

Hopefully my next post will have lots of sun, sand, and salmon!

Okay, seriously...

2010-07-18T21:24:00.000-06:00

So Lola's down (but not out) with a tummy bug. I took her into emerg. last night because I was reading terrible things about her med interactions and liver damage. Since she went downhill so rapidly, I thought it best to take her in. We were seen pretty quickly, then she spiked a 40 degree fever, then they tried (in vane) to get an IV started, then they gave her 4 pokes to take blood. End of story: her liver enzymes are fine, and her valproic acid levels were within therapeutic range. They really wanted a urine sample, but Lolly wouldn't give it up - then she had a blow-out code brown - it was insane. I pushed the call button twice, and nobody came - so I somehow got her cleaned up, urine bag removed (you can imagine what that was full of by this point), etc. Fun. The Dr. came in and the smell hit him like a ton of bricks. Wow. It was intense. Anyway, long story longer, tummy bug. So she's sipping Pedialyte and ate half a banana and a few goldfish crackers today. She's sleeping lots, and snuggling more. My poor sweetie.

Anyway, we're hanging out up in bed - for the past two days. I'm going stir crazy. I snuck downstairs to make a sandwich - felt so decadent. Hopefully she's doing better tomorrow.

The boys are having an amazing time, as evidenced by the Facebook photos Steve's been posting. I'm living vicariously through them.....zip lines, sprinkler parks, hot tubs, bike parks. Man, I miss them!

Ketogenic Diet

2010-07-16T08:23:00.001-06:00

After an hour-long phone call last night with a dietician at ACH who specializes in the Ketogenic Diet, we have decided that we will be starting the diet as soon as we can. This diet helps to control or decrease seizures that are resistant to meds. When meds aren't doing the trick, this diet is often a next step. It dates back to biblical times - it is a type of starvation diet. Don't worry, Old Lolly the food lover won't be starved, but she will be carb/sugar limited. If you would like to read about the diet, this is a good place to start:
www.charliefoundation.org
So Lola and I will have to stay at the hospital for roughly five days in order to begin the diet. She needs to be inpatient so that her ketone/blood sugar/etc. can be closely monitored. It is a very precise diet - everything she eats needs to be weighed and calculated.
Since we added Trileptal to the Divalproex Sodium, Lola is doing so much better. We emailed her neurologist, who agreed it was these drugs in combination that seem to be working for Lola - and she increased the Trileptal by one pill. So today is day one of two Trileptal pills (250 mg) am, (125 mg pm), added to the 250 BID of Epival. Pray that we aren't pushing it and that the drop seizures continue to abate.

Steve and Liam left for Whistler this morning. Boy, is it quiet around here! So today I've got some loose ends to tie up because Leni will also be off for the next two weeks. Lola and I will be batching it! We sent all our clothes/toys/stuff with the boys so that all we're taking on the flight is a carseat/stroller/carry-on bag. Thankfully it's a quick flight!

Big Girl - small car

2010-07-15T09:05:00.000-06:00

Lola's favorite ride-on toy. When we were inpatient the first time, Lola used to ride this car up and down the hallways of ACH. Now she's a little bigger (?) but she still likes to go for rides from time to time.

Holiday ready...

2010-07-15T08:39:00.000-06:00

Liam and Steve are raring to go - they're heading to Whistler tomorrow, where they'll stay for a week. Liam is going to go to bike camp for a few days, so he is pretty excited. Steve will be riding (of course) - let's hope they get some decent weather.

Grampa Ed visited for a week, and the kids loved to have him here. He had to sleep in Lola's princess room, which was kind of funny. Riley got a million walks, Liam got to play about 87 games each of Ducks in a Row, Spot the Difference, Battleship, Candyland - you name it, and Lola had some quiet time with Grampa reading books. It was really nice to have him here and meant the world to Liam.

Stephen the Neurologist - so we had a neuro appt a couple of weeks ago, where we expressed our concerns about Lola's seizures. What to do...what to do. We discussed meds, ketogenic diet, and surgery. We all agreed that surgery is way way way down the road, and that the meds weren't working regardless of the dosage or combination. Lola was a pickle in the appointment, so we took turns taking her down the hall, out to the van, etc. On one of these trips, Steve told the neuro he wasn't happy with the "wait and see" attitude and wanted something done today. He suggested Trileptal, and the neuro thought it was worth a try. Well, she has not had one tonic seizure since we started the med. Seriously! She's still having drop/atonic seizures, but things are certainly on an upswing right now. I almost hate to post - don't want to jinx it. When we were in Fernie last weekend, she was not in a good state at all - constant seizures, very unhappy, post-ictal most of the trip. We were so worried. So anyway, we're praying that this new pattern holds not only for our trip to Vancouver Island, but just in general as she's doing so much better.

Okay, I should get packing. I have to have Lola and I totally packed because the boys are taking all our luggage with them - Lola and I fly (yay, airmiles) to Vancouver next Friday and we want to travel light!

Birthday Girl

2010-07-11T16:29:00.001-06:00

Happy 4th Birthday to my beautiful Lorelai Audrey Grace – aka Lola, Lolly, Lolly-Grace, Lollypop, etc. etc.
It would be too easy to look back to July 11, 2009, which we spent at Aunt Pub and Uncle Lipper’s – to remember that you didn’t know how to eat your princess cupcakes. We pretended that you were eating them, for the sake of a few photos, but in reality, you weren’t quite there yet. You received tons of presents and lots of love from your extended family – lots of visits from Grama and Grampa, Papa, the Douma gang, the McEwans, the Howsons – the whole gang.
It was last summer when Mary got you to stand (fully supported by her skilled hands and knees) and we all cheered and cried. We were completely amazed that she could get you to bear weight on your legs and support yourself upright – even if she was doing a lot of the work. It gave us a glimpse into your future – one where you walked, and danced, and ran unassisted. Mary gave us the gift of hope that day, which should never be underestimated.
It was last summer when Aunt Mich and Aunt Dina brought over some cute little summer shorts outfits, matching hair bows, and some really cute shoes. When I put the shorts on Lola this week, I was reminded of how excited Mich was to give Lola her present – and how much she loved “little girl” shopping.
To say you’ve come a long way this year would be such an understatement. You’re an amazing little girl. My protective love for you intensifies whenever I watch you go through a difficult medical procedure, or endure something a small girl should never have to experience. I’m reminded of the fragility of life, and how you’ve defied all the odds. I’m just so thankful that you’re here, and that you’re incredibly resilient, and such a joy. I feel lucky – and I know that sounds strange given the hand we’ve been dealt – but I do. I know that you serve a greater purpose – and it’s to help others along the way…to give strength, love, and faith…a second chance. We all need something to believe in, and baby, I believe in you.

2010-06-12T11:12:00.000-06:00

kid pics

2010-06-07T06:25:00.000-06:00

Up to her usual tricks...

2010-06-01T18:18:00.000-06:00

Actually, she's got a few new tricks, and Liam's keeping a list. Yesterday, on our way home from the hospital (ivig day), Lola started singing in a low voice in the backseat. It was so cute. She's an alto apparently! The song was called "Dada" and it was definitely singing.
Tonight at supper, Liam got the hiccups, so Lola decided to imitate him - I caught a wee bit of it on video.
So we've been having more seizures lately, and Lola's having a rough go. sigh. We're hoping yesterday's ivig helps her out substantially. And in true Lola form, she's doing well despite the crummy seizures....really focusing well, and listening to what we have to say. She follows our instructions too, which is a big change.

Biker dude

2010-05-22T19:49:00.000-06:00

dancing with the stars

2010-05-22T19:26:00.000-06:00

Cruising through May

2010-05-22T19:20:00.001-06:00

To say it's been a busy month at the Exley household would be an understatement! Baseball has started for Liam, bike season for Stephen, musical/drama festival/play season for me, and of course all of Lola's ongoing therapies/playgroups, etc. It's kept us hopping. Lola just recently decided that Topamax has to go, so she started having drop seizures again to further illustrate that point. We're down to 25 mg am/pm, and will continue to decrease after we hear from the neuro on Tuesday. Of course these things tend to happen on long weekends and holidays. sigh. She hasn't bonked her head though, so we're just keeping a very close eye on her every second of the day. Her next IVIG is scheduled for May 31.

2010-05-10T18:24:00.000-06:00

Lola's swimming!

2010-05-10T18:15:00.000-06:00

Lola goes with her Developmental Specialist, Deannie, to Cardel Place to swim. She loves the lazy river - and has a blast when they go.

May's here

2010-05-04T06:17:00.000-06:00

Lola had her ivig yesterday, and although it took 6-8 tries to get her iv started, once it was in she fell asleep for two hours. She did great. I love how she has so few seizures (like...none since yesterday early afternoon) right after the ivig. It's a miracle for sure. We went to visit some hospital friends, and Lola was giving out hugs all over the place with a big smile on her face. What a darlin'. She only hugged the people she remembered - Doods (one of the cleaners we've known since inpatient), Zenaida (our fave nurse), and Jane (our fave charge nurse). It was a crummy day, but it's done for a month. Next visit is May 31.

Get ready for a whole lotta pictures!

2010-05-02T15:51:00.000-06:00

While cleaning the garage, Steve came across Lola's beloved Hedgehog book.

Daddy got a new camera for his birthday, and although she was none too compliant with the photo shoot, Lola was indeed his first victim.

These pictures are important not just because of the new camera thing, or the beautiful child thing, or because Lola got a new hat (yes, another one) - but because she's never been able to play in her playhouse. Last year she wasn't mobile enough, and was pretty much housebound. So today she checked it out - she wasn't in a great mood, but that's okay.

Is it Spring yet?

2010-05-01T07:50:00.000-06:00

I don't know why we're surprised when schools are closed (not mine, though!) in late April due to snow. You'd think we would have realized what the weather's like out here. Apparently not!

I attempted to upload a video (for two days) of Lola riding her bike, but it just won't load - it's too long, I guess. Her physiotherapist brought out an adapted two-wheeler (really a 4 wheeler) for her to try - and Lola was holding onto the handlebars with both hands (at times) and pedalling by herself. It was so cute to see. She didn't like the wind and got distracted by sightseeing from time to time - but she still managed to ride a bike!

Lola is going to be attending preschool next year at the local rec center. Steve lined up at 6 am on a Saturday just to get her enrolled. She got the 2nd last spot, and we're very excited. Lola loves other kids - and she'll get to go swimming regularly too.

Seizures are about the same - around 3 per day. Her ivig is on Monday, and she always does better afterwards. We are still bringing on another med, which won't be up to full dosage for another few weeks - hopefully that will help. sigh.

Liam's going to be starting baseball next week, and he's pretty excited to be on his team b/c it's sponsored by Dairy Queen! Lucky guy!

oh happy day....

2010-04-07T19:01:00.001-06:00

Liam at the pump track in Canmore - his face says it all.

Lola cheering him on from the sidelines.

Cutest sleeping position.

Checking out what's for dinner.

Lola in a full-on run - doesn't get any better than this.

Well, we've been completely stressed out over today's neuro appt, b/c we were receiving results from Lola's EEG/MRI, which is rarely a cause for celebration. But today we actually got some good news - our neuro does NOT believe that Lola has Lennox-Gastaut (thank GOD), and that her EEG does not show the spike and wave pattern that is a hallmark of the syndrome. Her MRI is unchanged - so no new injury/areas of concern, etc. Her EEG did show epileptic activity, but it was done before we began IvIg treatment, and before we started the new med (Topamax) (that, and she screamed the entire EEG so they didn't get a great read - just lots of chaos). Overall, our dr. was happy with Lola's response to IviG, and continues to see improvements in her clinically, which is more important than any MRI reading in Lola's case. She just baffles them medically. She makes them work hard for their money, so we've been told.

Anyway, just relieved. And so very thankful for the prayers and positive thoughts.

Now to remove my shoulders from my ears.

p.s. The Taming of the Shrew goes up in a week and a half at Bowness High School. Be there, or be square!

Blog gone off the rails?

2010-03-31T07:57:00.000-06:00

Lola saying hi to uncle Sean.

Hmmm.....just trying to sort things out with this blog - it's having issues.....

L'il Miss Lol has been sick this week with a cold - grumpy girl. She woke up this morning in a good mood (and no seizures so far...) so we'll see how the day progresses.

afraid to jinx things....

2010-03-21T19:14:00.000-06:00

Lola had only one seizure today. That's it. One. She had the same one that she has every morning at 8 am, just before meds, just before breakfast.

Is it the result of the ivig? The decreased epival? The addition of half a Topamax at night? It's worth noting that when we put her into her booster seat at supper, there was a shiny, red 25o mg divalproex sodium sitting in her seat - so she'd spit it out at breakfast and we didn't notice? Or at supper last night? Is that the reason??

We're perplexed. And so incredibly thankful. And hopeful.
Keep those prayers coming.

xo

What a day...

2010-03-17T20:58:00.000-06:00

This picture pretty much sums up our day.

Checking out Treehouse, eating a wagon wheel - that's how she rolls.

Lola in Happy Meal heaven....notice the fries all over her lap - couldn't stuff 'em in fast enough.

Good ole Liam had this costume on when we came home, and sang us "Five Little Leprechauns". So funny. He's quite a character.

Lola had her sedated MRI this morning - and what a nightmare that was. Actually, things were fine once we finally got in there, however, the 2 plus hour wait with a screaming,starving 3 year old who didn't get to take her am seizure meds (though I'd explained the situation to the MRI staff over the phone, neurologist, etc.).....you get the picture. Have you ever heard Lola cry? Let me tell you, it's an experience - it sounds like a raptor stuck in the brakes of a car. No joke. Anyway, yeah. Fun. So we got through that, and were sent up to Medical Day Treatment - Lola had a seizure on the way up. Great. We got set up there, I force fed her her meds (always fun) and she fell asleep. We were so thankful for that two hour reprieve from the screaming - and so happy that she actually got some rest. Anyway, she had a few seizures during the IvIg, which was disheartening, but really, given her day and her med situation, I wasn't too surprised. We got out of there after five o'clock - the last two hours were rough, and she didn't like being tethered to a pole on a short leash, unable to leave the unit. She got to have her blessed Happy Meal on the way home - poor girl earned that one and then some. We're scheduled to have Ivig again in three weeks, and three weeks after that, etc. etc. We're praying it helps control these seizures.

Lola also had an EEG last week, and a neuro appt. We changed meds (well, we're tapering off one, and up on another) from Divalproex Sodium to Topamax. We still think, in the back of our minds, that these seizure meds are responsible for the seizures - all starting with Trileptal. Our neuro told us that this med caused the atonic seizures - she said that once the med was gone, the seizures would be gone. ??? Anyway, yeah. So I've cut her pm epival dose by one pill, and so far so good - decreased seizures. Now who knows, b/c we have to bring the Topamax up very slowly, so she's on a tiny pm dose of that for now.

While we were at the neurologist's, she said that she'd been consulting with another neuro who reads the EEGs. She said he'd mentioned Lennox-Gastaut, which threw me instantly into panic mode. I'd read about it before, and when I went home I read about it for hours and hours. Though she doesn't believe Lola has this, it's worth mentioning that another neuro sees similarities in her EEGs that coincide with LGS. We should know more on that April 7 when we see our neuro again.

So there you go - the reason for my non-existent posts. I'm so tired of worrying. It's hard to stay hopeful some days. Lola seems to know when we're at our lowest - several times today, when asked her name, she smiled and replied, "Yaya" with enthusiasm. Yaya is what she called herself before she got sick - Yaya Exy. Pray for a break for this kid, will ya?

Nothing too exciting....

2010-02-27T06:55:00.000-07:00

We haven't had too much excitement around here lately, much to Liam's chagrin. This boy is BORED. He's so ready for spring - he needs to be outside on his bike. Today Liam starts swimming lessons - he's going for his level 2, and he's crazy excited.

Lola's been up to no good most of the time. She's a bit of a troublemaker. She likes to throw her sippy cups/toys into the garbage and laugh, she likes to wait until you're bent over, and then she'll smack your butt really hard (laughing the whole time, then running away). See what I mean? A wee bugger. Anyway, it keeps us laughing, and it definitely keeps us on our toes. She's been doing really well with her therapists/developmental specialist - they note improvements everyday. We're still battling the seizure monster - and some days we don't win. We're still waiting for an MRI to see what's going on. In the meantime, we do what we can, and feel quite helpless. How can we "fix" this? It's pretty frustrating/heart-breaking - but she's a tough one, as we all know.

Words: at school she will say "more" and "all done" or some approximations of those words. She's saying "tat" for her cat that she sleeps with (a stuffed one, don't worry), and "tee-tat" (kitty-cat). She also says Mom (but only before bed, with her cheek pressed to mine - it's almost a sigh - the sweetest thing), and of course Da-Da, which she says a hundred times a day.

Her latest thing is dancing, and stomping her feet. Especially when you sing/play "Skip to my Lou" - Liam gets in on the action with the "Lost my partner" part of the song. So cute. She also likes to play her tamborine - she goes crazy, stomping around and smacking that thing on her leg. Funny kid.

Sleeping lately has been brutal - but she sounds like she has a bit of a cold. It takes us up to two hours to get her to sleep, then she's up a couple of hours later. We can't just leave her in her room, because she gets out of bed and hammers the heck out of her door with her fist. It's so loud! Anyway, she's happiest when she's got mom or dad in bed with her, and about 30 stuffed animals and maybe a book or two. Did I mention she has a single bed? That's some comfy sleeping right there.

Steve's busy planning a bike race - with the proceeds going to loveforlola.com as well as to GRIT, Lola's school (that's if we make a dime - these are our intentions). Sean has also been lending a creative hand, designing posters/stickers/letterhead and such. It's coming together nicely, but it's a lot of work.

I'm crazy busy at school, as usual. I'm directing two plays at once right now, which is fairly insane. After school, I'm directing The Taming of the Shrew, and in Musical Theatre, I'm writing/directing Glee: the Musical. It'll all be fun once we're in show week, but right now I'm not sure how this is all going to come together. Maybe that's why I can't sleep and I'm blogging at this time of the day? Could be.

This is how I cope: on Thursday, I entered the theatre from backstage (where my office is) while riding a broom. I got off the broom and said, "Man, traffic was brutal!" My students rolled their eyes, and a couple of them laughed. I looked over to see my principal and some parents/students - I guess he was giving a tour. How embarassing. I was mortified. Oh well - another day, another humiliating life experience.

A beautiful day in Banff...

2010-02-08T07:00:00.000-07:00

Though it was -14 in Calgary, we headed to Banff to see what was going on. It was much warmer there, sunny, and gorgeous. We wandered around, went for a walk along the river, checked out some shops, then headed home. Lola did not want to stop moving, and she did not want to go into any shops (how could this be my child?!) Luckily Liam did, so Daddy took Lola for a long walk.

It was a perfect day.

Introducing.....La-la!

2010-02-05T06:49:00.001-07:00

Lola had a huge breakthrough yesterday (at least that's how we see it) - when I got home from work, Leni said that Lola had been trying really hard to talk. Usually she'll just babble "dada" a lot in response to questions. Today was different. Leni said, "What's your name?" Lola thought long and hard, looked Leni in the eyes and replied, "Yali." Leni said, "You're not Yali. What's your name?" Lola did the same thing, and said, "Lala." Last night I tried relentlessly to get her to say it for me - and the strangest thing happened - she would puff up her cheeks with air, and struggle to get out different B sounds. Then an L sound. Then finally she said, "Lala." What a miracle! We are so excited. She seems so interested in communicating now - so let's hope those new words keep flying.

Seizure-wise, things are about the same - she has a handful of head drops per day, and sometimes a couple of bigger ones. Yesterday she didn't have any big ones, which is great.

Liam had his Winter Carnival at school yesterday, and got to wear a jaunty sash around his waist like Bonhomme. He was pretty excited. He got to drink hot chocolate and eat maple syrup. He talked about it all night, so it must have been something special!

See ya, January.

2010-01-30T20:20:00.001-07:00

Well, that month certainly sucked for Lola, though we started to turn things around near the end. Basically, we've been playing the meds game - and it's not fun. The side effects of these meds range from rage to liver damage and the list goes on. So basically we just watch her intently day and night, and fret and worry. When I called to renew her prescription, I was told that I'd exhausted my supply for the month - huh? I explained that we'd been following the dosage exactly, and that we had maybe two days left of the stuff. They had the neuro pharmacist call us back, and he questioned why she was on the syrup, when it was a 3X per day med, when our neurologist had requested an extended release caplet at 2X per day. Hmmm. Maybe that's why we haven't had total seizure relief yet. So now we're on day three of the new med (divalproex sodium) and praying that this will stop them once and for all. We still don't know where they came from, but they can return to that place at any time.

Lola's been doing great things at school - learning to sit for longer stretches of time, learning to wait her turn, etc. These are all great improvements. She gets very frustrated, but she's still inching forward despite her recent seizure setbacks. She also learned to kick a couple of weeks ago - usually just a balloon or a ball, but sometimes she likes others to know how tough she is. What else - she likes to be naughty and take off laughing, or smack the glasses off my face, laughing hysterically. This kid's a riot. (insert sarcasm here)

Other than that, we're just trying to make it through these cold, long months. Liam's doing well at school, but he goes stir crazy on the weekends. Can't wait for some extracurricular activities to start up so that he can burn off some of this energy! He finally got his hermit crabs - and he named them Flash and Smiley. I hope he doesn't pull a Lenny (Of Mice and Men) on them - they seem to hide an awful lot. He's very happy to be sharing his room with the stinky things.

Keep Calm and Carry On!

We now return to our regularly scheduled programming...

2010-01-13T19:55:00.001-07:00

well, not 100%, but she's doing much better. We're not sure if it's the weaned med, or the increased new med, but regardless, the seizures are decreasing. We've gone from 40 per day to 2-3. We'd prefer none, but we're trying to be patient. We spend most of our time staring at her, wondering about meds, trying to figure out this rubic's cube of meds.

Liam went skating this weekend, and he did great! He was a pro. The first couple of times he tried it, he hated it - he figured he should just put on the skates and fly across the ice. But now that he's SIX, he did it no problem! That's my boy.

New and Improved Lola!

2010-01-04T19:04:00.000-07:00

One Tough Cookie - don't mess with her.

When the going gets tough, the tough get bangs. She's sick of the kind of bangs that land her on the floor - so Mommy caved and gave her a new haircut. Bangs it is! Liam said, "Hey, she looks like someone I know." Anyway, it makes me feel better because I don't have to look at the huge bumps and bruises on her forehead. And besides - she just looks tough with the black eyes - the forehead bonk makes her look like something from Star Trek - and that's just not a good look.

all the colours of the rainbow.

2010-01-02T21:13:00.000-07:00

no pictures, please - just cheese buns...

wondering what the heck the boys were watching on tv

Letting us know it's all okay - she's still her sassy little self under the Beetlejuice impersonation...

Closing her eyes to give us the full, pathetic effect.

Okay, I swear I'm not getting a kick out of my daughter's misery - but check out how different her face looks a day later. Crazy.

She's doing much better - still having seizures from time to time, but they're much shorter, and less violent. We are still waiting to see the neuro on the 6th, so we are temporarily in a holding pattern with the crummy meds with Clonazepam to help get rid of the atonic seizures in the meantime. It's frustrating, considering the other meds are the ones causing the damn things in the first place. sigh. She's getting her sass back though, which is the main thing.

...and this too shall pass...right?

2009-12-31T20:15:00.000-07:00

Christmas day!

Yesterday morning - still not as colourful as it would get.

Later that morning - it's starting to settle in under her eyes. Still very swollen.

And this was taken tonight. Uncle Sean said she had "Irish sunglasses" on.......sigh.

Okay, so poor ole Lolly would like a do-over of the past few days. We couldn't agree more. Her drop seizures progressed to the point where she was having close to 40 per day - absolutely ridiculous, considering she was seizure free for a year. We finally took her into emerg after she took a huge fall on the hardwood floors and well, you can see for herself how pitiful the end result is. Liam can't even bring himself to look at her, and he cried pretty hard when the bump first came out. Poor guy. What we found out at emerg is that I am smarter than some neurologists. No really! Our neuro is out of town (of course - it is the week between Christmas and New Year's) and the on-call neuro suggested (over the phone) doubling her dose of Keppra. Initially he wanted to put her back on Trileptal, but I immediately refused - so their plan b (after much rumination/discussion) was to hit her hard with the Keppra. Since her drop seizures have coincided with the Keppra that our neuro increased on December 15, I think it's safe to assume that it may be having an adverse affect on Lola. So we left no further ahead, but at least we found out her bonk to the noggin was nothing more serious.

Last night was horrible. Truly horrible. Lola had cluster seizures, and rages lasting what seemed like hours. She cried and screamed when she wasn't seizing - and being overtired increases seizures, so...yeah. That's how it went. This morning we put a call into the on-call neuro again, and he agreed with me - lowering the Keppra dosage as I'd already started doing. Let's pray for a better night tonight. Today she had 15 seizures, which is about half of what she had the day before. They weren't as severe (overall), but still completely unnecessary. It was hard for us to explain to the ER people that this isn't "normal" for Lola. Yes, she has a brain injury. Yes, she has epilepsy. But we haven't seen a seizure since she first got sick last November! Her last seizure was November 24, 2008 - believe me. I remember.

Anyway, we're still getting things figured out, and we're in a bit of a holding pattern until our neuro returns. We have an appt to see her on Wed, Jan 6. Seems like a long time away given our past few weeks, but what can we do. I hesitate to show these pics, but I want to keep track of how bad things were on this med so that we aren't convinced to stay the course. sigh.

God Bless Us...Everyone!

2009-12-25T18:54:00.000-07:00

Lola's favorite thing to do is to read books. She spends hours looking at them, flipping pages, being read to by whoever is nearby. She can't get enough of them!

Christmas break...

2009-12-19T11:14:00.001-07:00

Lola in the gym at my staff kids Christmas party...

A wee time-out in the hallway. Gyms are loud places!

Liam - proud of his haul.

Santa finally brought him Pixos! (which isn't really as cool as the commercials make it seem...go figure)

On the way home from the party. Lola loves her talking puppy - it even says her name!

Well, we're in holiday mode starting today, except for Liam who has school until Wednesday at noon. That should give me some time to get my shopping done! Lola's school has wound down for the break, and she had a pretty good week of learning. How she is learning among all these drop seizures is beyond me, but she's doing just great.

We saw the neurologist this week, and she said that although Lola's EEG looked "better" she is still seeing seizures on it. This would explain the falling she's been doing. Poor girl. The other morning I counted 25 drops to the floor before I left for work. It's so sad to watch. The neuro thinks we can get this under control by upping her Keppra, because apparently we have her on a fairly low dose. We're praying this works so that she can play and run around without all the wipe-outs.

Lola is starting to make more sounds, and to string different things together. Today she said, "no thanks" twice - plain as day, when I offered her some cheerios. She said it while pushing away the bowl. She's also been saying "Santa" "dadda" and "bub" (bubby/Liam). If I ask her to say "Mama" she'll say "DADA" and laugh at me. What a bum. She's been very snuggly lately, and also really clingy as I am heading to work.

She's really starting to notice the Christmas decorations and lights but she hasn't attacked the tree yet - just taken down an ornament or two. This week she did some crafts with Deannie and they look pretty cute.

Okay, somebody's up from her nap and ready to terrorize. Gotta go!

Baby, it's cold outside...

2009-12-11T18:24:00.000-07:00

All ready to go to the concert...

Striking a pose before we left for the concert...

Waiting for brother's turn to sing.

Needing some reassurance from Mommy...

We've been freezing our butts off for a couple of weeks around here - temps have been close to negative 30. That's just gross. The roads are brutal, the commute is insane, and still, the snow keeps coming. Blugh. Is it May yet? I think that is about when it stops dumping snow around these parts.

busy times for the exley family...

2009-12-11T17:58:00.001-07:00

Watching Harry Potter.

Drinking eggnog - switched seats to sit close to Daddy.

Scary part in Harry Potter....

Mommy plays hairdresser - makes Grama proud. (wish this wasn't blurry)

New jammies are funny

Things are going full tilt around here - not sure where the time goes, but it sure flies by in a hurry. I can't believe we're so close to Christmas. It's scary considering I haven't really had time to start shopping yet.

School has been insanely busy lately. Combine that with Liam's school, concerts, tae kwon do, figuring out how to get him to and from school, etc. and Lola's therapy (Occupational Therapy, Physiotherapy, Speech/Language, Music Therapy, Feeding Group, Sensory Group) doctor's/specialist appointments, etc. and I'm ready for a break. I'm in bed most nights around 8:00. How sad is that? Anyway, enough whining - it's still a good life no matter how you slice it.

So this week we had Liam's Christmas concert. He was front and center, and got to hold up the "H" in Christmas, so he was pretty darned excited. He sang loudly and with great enthusiasm and knew all his actions. Last year at this concert, we didn't get to bring Lola, as she stayed at the hospital with Theresa babysitting her. Everywhere I looked that night, I saw sweet-faced little girls, dressed in their pretty Christmas dresses with bows in their hair. It was all I could do not to start crying. I told myself, "Next year, she'll be here." (over and over again). Well, she did it - she made it to Liam's concert this year, and she did great. She watched wide-eyed - so many kids! So many loud noises! She had a great time (and got crabby just as I was ready to leave too - Steve got to stay behind and wait for Liam.) It made me very thankful that we've come so far with our sweet girl.

Lola got to celebrate with an EEG, which she did NOT enjoy very much. It was the worst one yet in terms of her protesting (screaming/kicking/freaking out), but I think they caught a lot of what they needed to see. Since she's been on Keppra, she's been doing much better - until about a week ago, when she started to do the exaggerated startle thing she was doing awhile back on Trileptal (which led to the nasty drop seizures). So we're not sure if she needs her dosage increased or what - we see the neurologist on Tuesday. Pray that it's just a med tweak and nothing more serious.

She's doing great with her g-tube gone - everything is healing nicely. She'll be ready for bikini season no problem. I've already been online shopping. ha

While watching the Leon's commercial this morning (at about...oh, 6 am), Lola watched the pathetic Santa-auditions and said, "Thantha". I couldn't believe my ears. She said it several more times, and even said it for Aunt Pubba on the phone. She says "dada" a lot, but this sounds different. I'm sure she means to say it. She's also been spanking lots of bums lately for some reason (it's a strange household), and giving high fives. She has a blast with Leni (her caregiver), and Deannie (her Developmental Specialist), and they've given her so many new skills to work towards with the program she's involved in (GRIT, it's called "Getting Ready for Inclusion Today"). We couldn't be more happy with everyone involved. They're so caring and skilled. It's really amazing. Last week we had Lola's IPP meeting in our living room (didn't have to drive into Calgary for it - they all came here at 7:00 at night!), and amid lots of laughter and stories, we figured out Lola's IPP goals for this year. In many cases, they were writing and re-writing the goals at an amazing pace, because Lola's gains have been significant in all areas. For example, one of the goals was to learn to use a straw sippy cup, and for her to hold it herself. She mastered this a couple of weeks ago. She's quite a girl (but then, we already knew that).

Tomorrow night is my staff party (I'm the designated driver - fun...) and Steve's staying home with the kids. Then Sunday we're off to my staff's kids Christmas party. Liam is so excited to see Santa and to party it up elf-style.

More pictures...

2009-11-28T15:08:00.001-07:00

Newest interest: video games....it was bound to happen eventually

Eating grapes. This pic is for Andrea, because her boyfriend is in the background.

Checking out the cars passing by.

"Is she seriously making me go outside?"

Lazy Saturdays...

2009-11-28T14:55:00.000-07:00

Looking out the window watching Theresa drive away.

Brrrrr....

Mr. Crafty at it again...

Farmer Fred

Not a whole lot on the agenda today. We keep coming up with big plans, and then nobody moves to do anything about them - so obviously we weren't meant to go anywhere today. Liam is downstairs playing with a buddy, and Lola is tearing the place apart. I tried to take her for a walk, but as you can see by the look on her face, she wasn't into it. It's colder out than it looks! We're thinking of heading to Banff tomorrow, but then we'll miss the chinook here. Sigh. Decisions decisions.

Lola now knows how to do the stairs like crazy. She's speedy fast - sometimes taking them two at a time. She gets scared at the top when she's coming down - but once she sits down, she scoots all the way to the bottom no problem.

We're putting up Christmas decorations little by little. Lola is very helpful in this capacity. (insert sarcasm here: ). Some of the snowmen and bears are taking a beating. I was going to set up the Nativity scene, but thought better of putting it in its usual place. It'll be on a really high shelf - prime real estate these days. How many "up high" places does one house have? And better yet, how many years of bad luck would we get for smashing the Virgin Mary? Yikes.

Best Day Ever!

2009-11-26T18:55:00.001-07:00

I really hope my mommy gets me something good after this...... (note: she got cookies and chocolate milk right after)

Oh the drama. (no pain involved - really!)

Screaming in true pterodactyl form....

Before - look at her face - kind of suspicious....

This is actually a before picture (obviously) - but I can't switch the order for some reason.

Lola got her g-tube removed today! We are so excited about it. Steve took her into the hospital, and I met him there when I was done at school (I got a friend to cover my class, thankfully!) and I met them there at 2:15. They were already in the room, which Lola had taken the time to tear apart. We had quite a long wait, but that's okay! The Dr. came in and okayed the procedure and left (took all of 30 seconds with him) and then the nurse removed it. No problem! Lola cried, but only because we were holding her down. So here's a before pic of her with her g-tube, and an after pic of her without it! The circle is just duoderm to protect her skin from the tape which will protect it for a couple of days. The white stuff is stoma powder, which will help the hole to close up - it's like an adhesive. We prayed for this day to come, and here it is! She got a little Strawberry Shortcake doll to celebrate - she was a brave girl today. She walked all over the hospital (no stroller - she's too cool for strollers) and visited her friends on Unit 3. It's pretty funny to see the reactions on people when they see Lola for the first time in months.

Never quite prepared for what lies ahead...

2009-11-18T15:56:00.000-07:00

"If you learn from your suffering, and really come to understand the lesson you were taught,you might be able to help someone else who is now in the phase you may have just completed.Maybe that's what it's all about after all... "
Anonymous

I am devastated for the McEwan family, who have lost their amazing mom/wife. My sister, Micheline, succumbed to complications due to the H1N1 virus, and lost her battle today. I am shocked and saddened by what the family has endured these past few weeks. Today was the worst day ever. My heart goes out to Mike, who has lost his best friend, Kate, Kelsie, Chrissy and Trev, who have lost the most incredible mom - the loudest cheerleader at their games, their fiercest defender, and their greatest support. Mich had a blast wherever she went - and I can still hear her laugh ringing in my head. I am devastated to think that the kids have lost their mom - and that they just grew up, in that instant. Innocence lost. It's more than I can bear.

I'm going to think of funny things I remember about Mich:
- the last cross-border shopping trip consisted of Mich, Paula and I - Paula was done shopping after about ten minutes, and Mich and I still had our game faces on like 6 hours later. Finally, when Paula couldn't take it anymore, we got in the car to go. Just then, Mich decided she needed to buy toilet paper, so we went to a grocery store and Paula and I stayed in the car. She came out (after a good, long while) with a bag full of these tiny Breyer's ice cream cups, and spoons for each of us. Hey, if we had to wait on the bridge for awhile, at least we had mini ice creams!
- Dina, Mich and I went to Swish Delish for dinner, and had a few good laughs. We actually topped this trip off with ice cream as well, come to think of it.
- I used to sneak into Mich's bathroom when I was little, and play with her make up and her Tickle deodorant - I used to watch her and her friends get ready to go to Skate Country (they had their own skates! With blue wheels and rabbits feet hanging off the sides!),and basically pretended I was cool like she was.

I can't believe she's gone. Just like that.

Stairs

2009-11-15T10:09:00.000-07:00

I forgot to mention that she can climb stairs like mad now. She's not so fond of coming back down them though, and would almost always prefer a "ride" (spoiled girl) - but she can do it. She crawls up them really fast, and comes down on her bum.
She started giving us high fives yesterday - you get 3 in a row. Funny girl. She's also started smacking us (which goes along with the biting) (notsofunnygirl). It's hard to discipline her when we've been spoiling her like crazy for over a year - well, basically for her entire life.

Busy week

2009-11-13T18:04:00.000-07:00

Lola was a busy girl this week, with visits from the Occupational Therapist/Physio/Speech path, as well as her Developmental Specialist (Deannie) whom she works with Mon-Thurs. She also got to go to her feeding/play group on Tuesday with Deannie, and I guess she did great by all reports. She has taught herself to use a straw sippy cup! It's so great! She wanders around holding it under her left arm until she's thirsty again. When she's finished, she throws it across the room, in true Lola form! This week, she's been fascinated by Riley, our black lab. She's giggling at him as I type. It's like she just realized he's furry and about her height. Anyway, she follows him around all the time, and laughs at him. I don't think he's too impressed. She has also discovered her toys! She now digs through toyboxes until she finds just what she's looking for. She makes huge messes and walks away smiling. What a bum. She also loves to clear off countertops/desks/etc. eat remotes and blackberries (the phone, not the fruit...), and run when she hears music. She's been a blast this week, albeit insanely busy.
Next week in physio they're going to try her in a weighted vest - I did some research, and basically it should help her to focus/calm her down. At least it's not a helmet!
So we're still scheduled for g-tube removal on the 26th - so exciting! Next on the horizon is another EEG (poor girl)/neuro visit to make sure the Keppra is controlling any subclinical seizures (aka ones we don't see).

Liam's recovered from his cold/H1N1/cough/whatever that was, but has this crazy allergic rash we can't figure out. So we're washing all his blankets/sheets in hot water with a sensitive skin detergent and giving him oatmeal baths.

If it's not one kid, it's the other.

Life's good. Busy, but good.

Thanks for the love and prayers. xo Please keep my stepsister, Micheline, in your thoughts and prayers as well if you can spare them. She's nearing the three week mark in a coma recovering from double pneumonia/H1N1. I miss hearing her laugh. And I keep hearing her say, "Hey, Gilly, d'you know what?..." This is a very difficult time for Mike and the kids - can't stop thinking about them.

Oh Happy Day!

2009-11-04T20:39:00.000-07:00

We got a call today from the GI surgeon's office to schedule Lola's g-tube removal procedure. November 26th, here we come!! I can't wait to not have to worry about that tube getting pulled out, etc. It really freaks me out. I know that it serves a valuable purpose, but a tummy doesn't like a "foreign body" stuffed into the side of it. Her stomach has never healed perfectly around it. Anyway, we'll be very happy to see Lola with two belly buttons. Woo hoo! Hopefully it heals nicely and the procedure doesn't hurt her or anything. I've been assured it's not a big deal at all by Karen, one of our beloved g-tube nurses. She said that they deflate the balloon with a syringe, pull out the tube, then put some stoma powder to promote the stoma to close over and heal properly....a bit of gauze and we're out of there.

Lola started running today. She should be up to a 5k by Christmas. No seriously, she kind of jogs all around the house. She's a wee bugger - into everything and anything - didn't we already go through this phase once? Oh right - it's all coming back to me. Anyway, Steve laughs at her all the time - all she does is search for trouble. Liam's favorite lego sculpture? That's right - throw it on the ground and smash it. Anything on the kitchen island/countertops is fair game. Tonight I was getting her supper ready - good old leftovers - and she ran by and swiped a big piece of broccoli off her plate and booked it into the living room. She also likes to take things and hide them behind her back. It's priceless. Tonight, Liam ran by and shot Lola with his fake alien blaster thing (no bullets or anything) and she freaked out screaming at him. She was not impressed. She does love her Bubby, but shooting is out of line. She also loves to give big open-mouthed kisses - she likes to lick people too. What a kid.

It's been quite a year. So much that she's re-learned. I could write ten pages about her progress, but I'd much rather go to sleep.

Beautiful November...

2009-11-01T17:12:00.000-07:00

Tackled! Then a tickle fight...

Cookie face!

Pals out for a stroll...

Well, it's been almost a year since we began this journey. We've been through some very dark times, but through it all, Lola's spirit has persevered. She has overcome so much. We quickly got rid of the few reminders of Halloween to focus on decorating for Christmas! We'd rather look ahead than look behind. We have enough ghosts lurking in every corner that we don't need anymore reminders of that season. Onward and upward!

Lola and Liam have been playing together more and more, which is incredible to see. I find myself watching them chase each other around, giggling their heads off, with a smile on my face.

Steve found her doing something new tonight at the dinner table - holding her own sippy cup! Yay! She was feeding herself drinks of smoothie from her sippy and we were amazed.

What a girl!

Aunt Pubba was sad because Lola wasn't allowed to have an Oreo this morning (I was filling up the cookie jar and Lola freaked out). You can see what happened when she finally got one after supper. Yeah, somebody had a tub after that one!

afternoon stroll

2009-10-31T15:00:00.000-06:00

Lola and I just took a quick stroll and it is beautiful out! It was a bit windy coming back, but man, is it gorgeous out. Lola stopped to check out all the Halloween decorations. As you can see in a couple pics, she really enjoyed it!

hanging out...

2009-10-31T13:56:00.000-06:00

Ignore the crazy hair. She spends most of the day practising her headstands on the couch.

The flu is running its course, and Liam is feeling much better. I don't think Lola ever actually had it, but yesterday was not a fun day for her. Today she's feeling pretty sassy. Lots of giggles and playing. Liam is getting pretty bored up there, but he has Daddy for company today. Steve's friend, Gayle, just dropped off a huge bag of goodies/toys/treats for all of us, so Liam is in his glory. She always knows just when we need a pick-me-up. So he's upstairs writing "notes" with his cool pens on his letter L paper. He's in heaven!

Liam came downstairs to open the gift bag, and found some "poppy paper". He had a blast jumping on it while Lola laughed her head off.

and the verdict is...

2009-10-29T15:30:00.000-06:00

Lola has passed her swallow study!! Steve just got the results back from our pediatrician this afternoon. She has "no texture restrictions based on assessment results." "Lorelai demonstrated a safe swallow with puree and thin fluid textures. No aspiration, penetration or post-swallow residue were noted." Woo hoo!! We're pretty excited to have it all in writing. I mean, I would have felt pretty terrible if she'd been silently aspirating for a few months while I jammed food into her mouth. At any rate, we'll be proceeding with the referral to the surgeon for the g-tube wean. Our dream was to have her eating orally by Christmas - and so far so good!

Mr. Liam piam was diagnosed with H1n1 on Tuesday night. Poor guy. I took him into urgent care (along with 40 other concerned parents and their blue-masked children) and we started Tamiflu that night. He is recovering, but boy that cough is wicked. The fact that he's asthmatic complicates things. Anyway, he's doing much better. Steve got prescriptions for the rest of us to start prophylactic Tamiflu meds today. Greeeeeeeeeeat. Anyway, needless to say, our plans for Banff this weekend are out. sigh.

We are saying lots of prayers for Aunt Mich, who has been hospitalized since the weekend due to complications from pneumonia/H1n1. She is in intensive care, and is quite ill. She's a tough cookie, so we know she'll come around - just so not fun to imagine what her kids and Mike are going through. We are all very concerned to say the least. Get well, Aunt Mich! xo

So Halloween's a bust this year. Liam had his costumes narrowed down to a few choices, but in the end, he'll be wearing his jammies and a blue mask. If he's lucky, he'll get out of our bedroom, where he's been holed up since Tuesday. He said he doesn't care, but he wants a big bucket of candy. We said "no problem, buddy" - better than taking H1N1 door-to-door. Our neighbours will thank us.

New Lolly Pics!

2009-10-25T12:13:00.000-06:00

Craft time with Theresa!

Mum-mums from Daddy! Lola's favorite sport.

Being silly!

Well, that's better...

2009-10-24T15:31:00.000-06:00

Lola has been doing so much better with the Trileptal wean. From the first day, she stopped the drop attacks, her walking got steadier and more fluid, and she was a much happier girl. She also stopped turning her right eye in whenever she focuses on something close-up. What a relief! We still have two more days left of the wean, and today she started on the full am dose of Keppra. She's a little tired and whiney today, but other than that she's doing great. It is such a relief to have those drop seizures go away - it was so disheartening to see her have them. We worried constantly that she was going to hurt herself.
So everyday it's something new again. We love it when that happens. She's much more ticklish being off that med for some reason. She likes to be chased, and giggles when Steve says he's going to get her. Liam has been having fun watching Lola get into trouble. He just laughs and says, "Lola..." with a smile on his face. He doesn't stop her, mind you. Today she climbed onto the couch, then over onto the coffee table trying to get a candy wrapper. She also likes to walk along the couch cushions, giving us all heart attacks. What a girl. It's great to see how much more steady she is on her feet. She walks around all day long. Right now she is into snatching things off the counter on her travels - pretty much anything that she can reach. Last night as I was making dinner, I washed some potatoes and put them on the counter. When I turned around to turn on the oven, I noticed her booking it out of the kitchen - doing something naughty. I found her in the living room eating a potato like an apple! What a sneaker. She was really fast too! I guess she was trying to tell me she was hungry.
Right now they're watching the new Transformers movie, and Lola just laughed out loud at a fight scene. ?! What's that about?

My spidey sense was tingling....

2009-10-20T21:10:00.000-06:00

So it's no secret that I've hated Trileptal since day one (Lola's seizure med). I've just had a mommy-sense thing that it doesn't work correctly for her. I think it supresses good stuff too. So anyway, these drop seizures/atonic seizures that Lola has been having coincided with the increase on the Trileptal. sigh. So, my poor girl didn't have to suffer through them to begin with.
:( Anyway, this is how our day went:
7:30 - Lola, Mommy and Leni report to EEG and get the electrodes attached. Lola did very well with this part, but she wasn't too impressed. Once the smurf hat was on, her face was all squished, which made her pout even funnier. We sat her in her little tumbleform chair and turned on the cartoons.
9:00 - Lola is crying inconsolably and sounds like she has a sore throat/cold. We're confused. I check the wrap at her neck, to find it's way too tight (I checked when she did it, but it readjusted itself once the tensor bandage was attached). Like constricting her airway tight. So I ran to get the technician and she cut it off. Disaster averted. Lola still cried her head off for over an hour. Then she projectile vomited all over Leni and I. Then she slept. Glorious sleep. She showed them what they needed to see (bad, Trileptal-related seizures), and was disconnected after FIVE HOURS. Brutal day. We got her cleaned up and changed and off we went to wait for the neurologist. for TWO HOURS. No joke. Luckily Lola was happy to wander down the hallway. We saw the fish, buddies on Unit 3, Sparkle the Clown, and the magnificent splendour that is the Alberta Children's Hospital. (if you don't think this is dripping with sarcasm, you must be new...) Just as we were partying it up on Unit 3, we were paged to return to neuro. That was a fun little jog while carrying Lola.
So - her EEG caught the "spells", which is good. Trileptal is out, Keppra is in. Please let this drug cooperate with Lola. We went through all the pros and cons and this one will be better than another one they were considering. By the time we got out of there it was four o'clock. Seriously. I had barf all over my sleeve and hadn't eaten since 8. I got off easy - Leni had to walk around wearing no shirt and a down-vest all day. So we filled our prescription and bolted.

Lola was pretty much strutting all day for some reason. It was funny. The nurse who used to look after the brain injury team said she thought she might cry. I told her she was way too tough for that. She said, "You're right. I said almost." Had a little chuckle at that. She hugged me and was completely ecstatic. There are some amazing people at the ACH. Seeing her peeps on unit three was so fun. Mel, Shannon, Jane, Lani, Rebecca (SLP), and a whole bunch of other cool cats I've forgotten. They're like family.

Funny face

2009-10-19T07:41:00.000-06:00

Big girl - sitting at the table

2009-10-19T07:23:00.001-06:00

Come on, sippy cup - get in my mouth...

2009-10-17T14:30:00.000-06:00

Another busy week over! Tuesday Lola went for her swallow study, and it was an interesting day, for sure. She aced the first part of the test - we went into this little "kitchen" and Lola sat at the table and snacked away. The problem was, she didn't want two bites - she wanted twenty - and that part of the test wasn't for another our and a half. Sigh. So they watched her eat stuff, and she did well. Then we terrorized the halls of the hospital for awhile, waiting for our next appointment. We ran into several of Lola's former therapists and nurses, and Lola decided to show off her walking and jogging skills. They were all in shock and disbelief. It was great to see their reactions. So - we got into the x-ray suite and Lola got strapped into this chair. She was not very happy. This turned even uglier when she saw what they did to her precious goldfish crackers, cheese, and grapes. It was all coated in barium, and she wouldn't touch it. It was pretty disgusting - I certainly wouldn't eat it! The white junk was all over our hands, all over Lola's clothes and face. What a mess. At any rate, she didn't mind it in her chocolate milk and pudding, so they got some "beautiful" swallows on the x-ray. We haven't heard the result yet, but we do know that they wanted to see her handle all textures, which she refused. Not sure what's next??

We contacted our neurologist this week to let her know that Lola has been having what look to be atonic/drop seizures. This is a concern, because when she falls, she falls quite hard - they even put a helmet on her at school!:( How pathetic! And I guess it was too small for her too, so she didn't like that too much. We don't know what's causing them, but it does coincide with her seizure med (Trileptal) increase. Maybe that's the problem? Anyway, she is now booked into a 4 hour EEG on Tuesday, which should be a blast with a three year old who doesn't like to stay in one place. All she wants to do is run around (like most 3 year olds). They've told me to bring snacks and toys because she has to sit on a bed the entire time. Riiiiiiiiiiiiiiiiiiiiiiight. This is going to go really well. Let's just hope they catch what she's been doing on the EEG.

Other than that, she's still amazing us day by day. She's doing great with her eating, she's doing really well in music therapy, she's working hard with her Developmental Specialist daily, and we're so proud of her. Liam has started to like hanging out with his sister again, and loves to read to her in her room before bed. He also likes to pelt her with stuffed animals and bonk her with pillows too - maybe there's a connection? At any rate, it's great to see them interact again. They love each other so much.

Okay, I should see what she's up to. It's pretty quiet in the living room...

Gobble Gobble.

2009-10-12T12:29:00.000-06:00

Well, we certainly have a lot to be thankful for this year. Of course, I'm also drawn to reminiscing about last year, as Lola was perfectly healthy as we celebrated Thanksgiving. That won't do me any good though. Today I set the table for six: four Exleys, and two Mellises (Uncle Sean, and Cousin Kevin) - Lola will be sitting at the table with us in a booster seat, which I'm sure she'll really enjoy. It was so cool to be able to put her Winnie the Pooh placemat, little plate, and spoon and fork - I dreamed about her eating again, and now it's a reality. So she'll sit right between Mom and Dad, and will likely make a huge mess. She's too big for the highchair (and I've already got it all cleaned and ready to sell, and I'm not doing that again!) so we're trying out a cool new booster. I hope it does the trick. I'll try to remember to take some pictures!

Lola goes for her swallow study tomorrow morning, so wish us luck! If she passes this, she should be well on her way to having the tube removed. It's really just a safety net/minor annoyance for us now - always making sure she hasn't pulled it, doesn't have any granulation tissue, keeping it clean, etc. I can't wait to see her new tummy with two belly buttons. So at the study, she'll eat a variety of foods dipped in barium - then she's x-rayed in a special chair to see what's going on. We're pretty relieved she doesn't have to have the old cameradownthenose test again. I'm not sure that would go over so well at this point in her recovery. I'll keep you posted.

Other than that, both kids are getting over colds, and Liam was diagnosed with asthma. So two inhalers later, he's feeling so much better. It's so freaking cold here right now - like in the negative double-digits cold. Brrrrr.

Okay, I should keep cooking!

Happy Thanksgiving, everybody!

Snow Day

2009-10-04T13:05:00.000-06:00

Lola's favorite sport these days is wandering. She stands up, walks out of the living room which is adorned with delightfully cushy floor mats in primary colours which clash with everything in our house, to get to the hardwood floors. She repeats this until a. she falls b. she finds someone's hand to hold c. she gets redirected back to the living room, or d. she gets taken downstairs to the carpeted playroom. What a girl.

Yesterday the kids went to a birthday party, and Lola did okay. There were lots of kids, lots of obstacles, different rooms to negotiate, etc. We stayed till the cake and then bolted!

I attempted to get some pics of the kids dressed up, but nobody was cooperating. What a surprise.

Just walking - no big deal...

2009-10-02T16:21:00.000-06:00

So now Lola kind of likes to strut instead of walk. She has progressed from the "old man shuffle" to taking bigger steps. We've been watching her right instep for signs of it turning in, etc. but she seems to be doing fine when she walks in bare feet? What do you think?

And Lola's big news today: she pooped on the toilet! What a big girl. Unbelievable.

Lola on the move...

2009-09-29T10:08:00.001-06:00

Will this video ever upload??!! This is just the short one - sorry for the teaser!

Lola's Check-up

2009-09-28T20:27:00.001-06:00

Lola had a visit to her Pediatrician this afternoon, and we have set up a videofluoroscopy test (swallow study), a follow-up with her GI to discuss g-tube removal (pending results of test), an appointment to discuss possible orthotics for her right foot which seems to roll in a bit, and I think that's about it. Leni had Lola all dressed up in the cutest outfit, with her hair in braids with big ladybug barrettes that Mickey got her when she was in the hospital. So cute! Lola was so excited to go to the doctor's - until she realized why we were there. She gave the ladies at the desk a big grin, then came time to get weighed/measured. For the past ten or so months, this has involved me getting weighed first, then holding Lola, then subtracting my weight. And for height, she had to lie down. Well, today she stood on the scale all by herself like a big girl, and then stood at the wall and had her height taken! She was so cute when they slid the ruler down on her head - she scrunched up her neck and smiled. She did this a few times before they could get it. So my girl now weighs 16.5 kg (36.37 pounds) and is 99.5 cm tall (3 feet 2 and a bit). So she's 86th percentile for weight, and 76th for height. Not bad for eating 100% orally! She's holding her own nicely! So Lola walked into the appointment holding my hand. Let me tell you, that was the best feeling in the world. This dr. is replacing Lola's ped. while she's on maternity leave, but we saw her while we were inpatients. She hasn't seen Lola since January, and was shocked by the transformation. Lola was none too cooperative once we got into her office, however. She did NOT want to have her lungs/heart listened to at all, and she did not like being examined. Crabby girl! She promptly fell sound asleep in the van as soon as we were out of there. I think I should start to take her fun places - everytime I take her in the van, she gets all excited, only to find out that she's getting an EEG or going to the dentist. She looks all around at the cows, and fields on the way in - very exciting. She must be like, "Uh, thanks again, mom. I really love our weekly outings to pain and misery camp."
Tomorrow, Lola gets to go to playschool with her Aide, Deannie. Isn't it cute how her Aide and her Nanny have rhyming names? So her little Nemo backpack is all packed up with her princess lunchbox for snacktime. So cute.

Oh, and I tried all night to upload the video, but it's over a minute long (that's right - that means Lola was walking/standing for that long). Anybody have any suggestions?

These boots were made for walkin'....

2009-09-26T15:57:00.001-06:00

Lola just took several steps across the room all by herself. Usually she will take a few steps to get from one couch to the other, or she can be coaxed to let go of the couch to walk a couple of steps to one of us. This time, she was holding onto the couch and just started walking by herself! Steve started yelling to get my attention - we're both in shock! Now she thinks she's really cool and she's done it several times.
I keep trying to get some decent video, but she's not cooperating. i'll keep trying!

Lola starts SCHOOL!

2009-09-19T15:32:00.000-06:00

Lola started working with her Developmental Aide, Deannie, on Sept 8. She has been doing great things! She is much more steady on her feet, and has taken several steps to us on many occasions. She is eating tons, and we are 100% not using her g-tube at all. Wow.

Last week we went to ACH to have an EEG done, as well as a visit to Lola's neurologist. She did great during the EEG, and even fell asleep as she was supposed to. Unfortunately, she did have a seizure while we were there. Well, actually it's a good thing that it was caught on the EEG - but a bad thing that she had it. It was not detectable to the eye - they watched it several times on the video monitor, and she's just happily chewing her toy with a smile on her face. Anyway, they figure that she's grown so much that she outgrew her Trileptal dosage. So it's being upped and hopefully it'll make the seizures stop. Since we changed the dosage, she's slept through the night twice, and she's happier and less grouchy. We go back in a few weeks for another EEG.

Kraft Dinner....after a nine month hiatus

2009-09-07T19:33:00.000-06:00

Here are some pics/video of Lola enjoying her twelfth meal of the day. She has first and second breakfasts, just like a wee hobbit. Don't worry, the KD was just a snack - she has been eating strawberries, watermelon, applesauce, cheese, chicken, etc. - all the food groups have been represented. In one of the videos you can see the start of a shiner just beside her eye - one of several bonks she took today. I just might start making her wear her bike helmet around the house - we threaten it all the time.

Liam had a great day out in Canmore with his buddy and his dad. They biked all day and he's looking pretty tired now.

Lola met her Developmental Aide today, and she is going to be amazing. She could not believe that Lola was the same girl whose reports she'd been reading from several months ago. She was honestly shocked when she walked in and saw Lola walking around the furniture, etc. She really wants to take Lola into town to the playgroups that are offered through the GRIT (getting ready for inclusion today) program. They run on Tuesdays, and will give her an opportunity to socialize and meet some new little friends.

Okay, off to do the bedtime thing.

Eating us out of house and home!

2009-09-03T07:13:00.001-06:00

And we're just fine with that! Lola is now eating breakfast, lunch, supper, snacks and more snacks by herself (or with us feeding her). She is only getting pediasure once per day - and after a week of that, I will stop that altogether. She is doing much better with her drinking - up to 4 ounces at a time. Unbelievable. The hard part will be getting her to take her meds orally, but she is now only on two so it should be easier than when she was having to take many more. We are still so shocked she's eating - and cheer with every mouthful she takes. She's probably sick of our clapping and yelling.

As far as medical stuff goes, she has an EEG coming up next week. She has to be sleep deprived, so she's woken up at 4 am and her appointment is at 7:45. They will attach electrode/wire things to her scalp with this sticky gross glue which takes forever to get out of her hair, and they will record her brain's activity to determine if she is having any seizure activity. Her neurologist will get the results of this test and we'll discuss it at our appointment the week after. Fingers crossed it goes well. Lola HATES this test and will scream the whole time. (then I get to drive her home, then bolt back to work).

Lola's still working on the walking thing. She does a lot of "downward dog", and pulls up on the couch and walks around the furniture. She has some big crashes, but she's doing really great.

And she's just waking up for the day so I'd better go get her! Little Miss does not like to wait.

2009-08-22T18:35:00.000-06:00

....and to top off the standing, she fed herself mashed potatoes, carrots, banana, cheese, blueberries and CHICKEN.

You're all likely thinking I'm insane.....and I'm okay with that.

What can I say about Lola.....

2009-08-22T16:52:00.000-06:00

....she STOOD UP by HERSELF today.

I am in complete shock. I'm home by myself, and Steve has the camera. I was sitting on one couch, watching some lame cheerleading special, and I looked over to see Lola standing up holding onto the loveseat. She stood there for about ten seconds, and then she did it again while I was on the phone telling my sister. She is SO incredibly determined.

I think I may have dreamed this whole thing....

So THAT's what I'm supposed to do with food??

2009-08-20T20:31:00.000-06:00

Since I last posted, Lola has decided to join the world of mouth-feeders. We are completely in shock...and a bit freaked out. I didn't know whom to contact (in the medical world) to give me advice - so I got in touch with one of the g-tube nurses. I said, "So, what do I do when Lola starts to eat?" She said that once Lola takes 100% of her food/liquid/meds by mouth for three months, we would let them know and the surgeon would see her to discuss removal. The thought of that makes me want to scream out loud - It would be amazing. So Tuesday at dinner, we let Lola experiment with different pureed foods on her high chair tray. She was licking her fingers and trying to put everything on the tray in her mouth. Then I tried her sippy cup, and while she certainly didn't suck anything out of it, she did swallow the juice. She drank a couple of ounces. Liquids are a big deal because they're so "fast" - which could cause her to choke or aspirate - we don't want that. The next morning, we thought we'd try some rice cereal and fruit - she ate the whole bowl! Then for supper that night, Leni cooked up some leftover steak, potatoes and peas, pureed it in the blender - and she ate the whole bowlful again! Today I made her oatmeal (the package kind that Liam eats) mixed with some pears - she did pretty well but the chunks were kind of gross for her. Tonight at supper, she had a Leni special again - ate it all!!! Seriously amazing.

My goal is to have her completely tube weaned by the end of September (after I meet with the dietician to discuss the course of action), which would make her tube free by the end of the year. I'm afraid that by typing that out, I've jinxed us. Wish us luck!

The other pictures are of Lola and her music therapist, Melanie - she is amazing and Lola loves her music therapy sessions. She's really doing well and usually brings her big smiles to the sessions.

2009-08-18T09:09:00.001-06:00

Phew - we made it home in one piece. That was a LONG trip back - it took us close to 13 hours, with several stops. This time, Liam threw up on the windy road, and Lola cried the entire two hours. She was not very impressed on this long ride, however she perked up when we stopped at a park and let them out of the car.

Lola is now trying to stand by herself. Seriously, she wants to give us all heart attacks. She just puts her one foot under her and presses up on her hands. If she stood up, she wouldn't have the control in her ankles to support herself (yet). She's going to need crash mats everywhere! She has also started to feed herself - just those little baby puff things, but it's a HUGE start. She doesn't want to be fed, but if she does it herself, she does just fine with it. We are so excited about this latest improvement!!

Vancouver Aquarium/Whistler

2009-08-13T19:22:00.001-06:00

We've been having a great time out West, despite the brutal weather. Steve has been getting in some biking and ATVing, I've been doing some shopping, Lola's been going for some fun stroller rides and a trip to Vancouver Aquarium, and Liam's been loving his time at day camp, spending time swimming and biking, etc. It's been really fun.