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.

and the verdict is...

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!

Craft time with Theresa!

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

Being silly!

Well, that's better...

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....

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

Big girl - sitting at the table

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

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.

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

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...

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.