It’s been awhile. The fall has zoomed by fast and furious, as it always does. I can’t believe it’s nearly December, and that Christmas is around the corner. Insane. September started off with Liam in grade six, and Lola in grade three (at her new school!) Liam loves his school, and has great teachers, staff, and friends. He continues to help out in the ES2 (special needs) classroom, and is determined to be a Special Needs teacher when he grows up. He has patience and kindness for these students – he talks about them all the time at home – we think it’s a perfect career choice for such a compassionate boy.
Lola has brought in her new school year with a bang – she’s a fireball of sass and energy pummeling around the halls of her school. She has amazing teachers and ed assistants who have quickly learned how Lola works. They challenge her and love her – and she’s doing great things. First of all, apparently she rides an adapted bike every day at school. Seriously? We’ve had an adapted bike in the garage for a couple of years that she refuses to sit on – freaks out, screams, cries. Apparently they have a magic bike that she loves to ride. Her school is an amazing facility, and at any time you can see kids whipping up the hallway in walkers, bikes, wheelchairs, etc. etc. I took Liam to her school on flu shot day, and he was amazed by the place. He was at times surprised by the severity of the disabilities that some students possessed, and told me several times “These kids aren’t like the kids in my ES2 class at school….” He couldn’t believe Lola’s school has a pool, a sensory room, and an amazing playground. He’s happy to know that his sister’s being taken good care of during the day. (And so are we). Lola’s been working on communication, and started using a PCS booklet last week that so far she’s liking. The goal is to lessen the frustration and accompanying behaviours stemming from her inability to be understood.
Lola has gotten so big. At her neuro apt this week, she weighed 86 pounds. What?! Seriously! She’s so active that I don’t know how she keeps any weight on. Her new med (Fycompa) causes weight gain – maybe that’s it. She’s got a huge appetite, which could also be it. At any rate, she outweighs her brother by ten pounds. Not cool. Now when she goes into meltdown, total starfish, flat on the floor mode, we’re defenseless. I can still pick her up, but it’s not pretty. And not good for my back.
Seizure-wise, the new med appears to be working. She’s still having 1-2 seizures a day, but they’re far less intense, and don’t seem to wipe her out afterwards. She hasn’t had any seizures at school, which is great. Basically she has one not long after waking in the am, and another one before meds are due in the evening. Her neurologist is cautiously optimistic (are any neurologists truly optimistic?) and thinks the med is working. He is trying to tweak the timing/dosage of the med in combination with her other meds to see what we can do. Fingers crossed.
Liam has really gotten into indoor soccer this year, and is enjoying his second year as a Keeper. He’s gotten much more aggressive and fearless in the net, and seems to be building his resiliency as well. That was a problem last year, that if he let in a goal he would hang his head and let a defeatist attitude impact the rest of his game. Of course I wish he’d play a different position, as it’s totally nervewracking to watch! His team is now Tier 3, which means they have Academy practices, and Liam also has extra Keeper practices each week. He averages five sessions a week, which is a lot. He’s still liking it though – so that’s good!
We’re so lucky to have Dora back on board as Lola’s caregiver. Steve and I tried to do it by ourselves for a year, and barely survived. We pieced together after school care that was neither reliable, nor conducive to any sort of family time. It was tricky. Now we have Dora, for a few months, anyway, full-time, which is great when Lola’s having a bad day and would be better off staying home. Lola and Dora have such a sweet bond, and I know that Dora always treats Lola like she’s her own child. Dora’s family will be coming from the Philippines in the new year hopefully, so we know that we only have her for a short time. We’re thankful for the extra help, the clean home (and laundry), and her daily presence in the children’s lives.
Okay, so apparently if I take a three month hiatus I write a novel.
We were lucky to be chosen through Tiny Light Photography to have Lola (and the family)’s pictures taken by the amazing Crystal Troeger Photography. We will be sharing her story in the future, which will accompany these pictures through their website, etc. The photographers volunteer their time and talents – what a gift. Crystal was amazing with Lola. It’s not as though we can walk into Sears Portrait Studio and get a family picture. Lola doesn’t work that way. Crystal followed the kids around, snapped pictures that showed who we are as a family, and treated us like we were “just another normal family” getting some photos taken. Lola was super uncooperative (big surprise), but it didn’t matter. The shots were gorgeous, and we will cherish them. I would recommend Crystal Troeger Photography if you’re looking for a talented photographer, with a great eye, who has enormous patience and a great sense of humour. Lola and Liam touched her heart, and it was evident that her heart guided her through the process.
So there’s the update! Sleep-deprived, busy, thankful. Looking forward to Christmas and the accompanying break from school. I’m forecasting some pajama days, movies, hot chocolate, and absolute mayhem.