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

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!

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...

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...

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...

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...

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...

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!

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...

"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

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

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!

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...

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

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...

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.