...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.