Got her sights on Santa!

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

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?

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!

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.

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

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!

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!

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...

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...

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

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...

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....

Back from the Coast!

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.