Lucky Number 7
Unbelievable that this small, mighty wee girl is seven years old. Even more unbelievable is that she is still seizure-free, nearly six months from her surgery. Lola’s corpus callosotomy was a success in many ways, but the biggest, of course – losing those seizures. She’s blossomed in a few ways – she’s more sociable, she’s vocalizing more, using hand signals (I wouldn’t call it signing) to tell us she’s hungry/thirsty/wants more of something, and overall is just more “with it.” Along with her newfound skills, we’ve seen a huge increase in behavior issues. She’s downright naughty most of her waking hours. It’s tough to venture out in public with her, because she’s liable to drop like a fish on the pavement because she wants to do something else, or try to let go of your hand to run as far away from you as she possibly can. This is problematic when you’re near a road. As exhausting as she is, we find ourselves chuckling at her most of the time (and maybe adding a pm glass of wine to my parenting regime), still in disbelief that she’s not having massive tonic or tonic-clonic seizures several times a day.
Lola’s favorite things:
– Ferb – from Phinneas and Ferb. She swiped a talking Ferb doll from Liam’s room, and she’s been carrying him around for a couple of months. He got kicked off the bus, because Lola wouldn’t allow any of the students to look at Ferb, touch Ferb, breathe near Ferb, or merely exist near Ferb without screaming at ridiculous decibels. That wouldn’t do. Caroline (Lola’s bus attendant and all around sweet, grandmotherly lady who is kind, yet firm with Lola) handed over the perpetrator one afternoon and said, “He is not welcome anymore.” She wasn’t joking. It must’ve been a long bus ride to and from school that day!
– Hootie – a stuffed owl. She adores this thing. It’s the first toy/stuffy that she’s shown more of a passing interest in in a very long time. She’s gentle with it, hugs it, and pats its back. She loves carrying it around, and sleeps with it every night.
– Ugly Doll – she loves a pink, three-eyed monster that Aunt Pubba gave to her. Strangely enough, it’s basically the same flatness and shape as Hootie. Feels like Hootie also. Hmmm.
– Sock Monkey – there’s another little fellow that was kicked off the bus. Monkey-Monk. He’s a little guy, but she loves him and kisses him lots.
– books – sister loves her books. She’s really hard on them, and loves to rip them, peel strips off the spine, etc. Sigh. I’ve ordered her a bunch of “indestructible books” – I wish them the best of luck.
– snuggling – she loves to hug and kiss and sit on people. Apparently she was trying to sit on one of the bigger boys in her class at school. He did not find it cute in the least.
– dancing – Lola loves to bust a move in the “Flex” room (aka her playroom). A song will come on the tv, and she will hop up and stomp around the room, often ending her routine on the floor with one leg up in the air. Hilarious.
– jumping on the trampoline – best purchase ever! She had to warm up to this contraption, but eventually she got the hang of it and now she loves it.
– her blow up pool and the hose – wow, this kid goes nuts with the water.
– swimming at a real pool – though we don’t take her nearly often enough, she cannot get enough of the swimming. She wears one of those floaties that straps around her chest with the arm circles – and just bobs around all over the place. She was blowing bubbles, jumping off the side, and having no problem when she accidentally got her face wet – no coughing and sputtering. Just smiles and giggles.
Lola had to be put under last week to have some dental work done. Luckily, the work was far less extensive than our dentist originally thought. She still had some cavities, and needed to have her back molars coated to protect them from future issues. The day was pretty rough – given that we must have gotten bumped from our first slot. We arrived at 7:20, and at 10:45 we were finally taken back to surgery. Anesthesia was rough – only because it sucks to see your child have the fight wrestled right out of her by five adults. That actually made me cry – I mean, in the big scheme of things, it’s only dental work – but it just brings back so many brutal memories of surgeries that weren’t so easily managed. I think I cried because she got broken down – that rarely happens. She’s a tough wee scrapper, which has served her well. I hate to see that taken from her. Following surgery, we were able to sneak her into Med Day Treatment to have her ivig transfusion done. It was so amazing that she didn’t have to endure more pokes – she slept through most of it. We are so thankful to Patty and Patty for staying late so that Lola didn’t have to come back the next day for more needles. So thankful.
So this month, Dora (Lola’s nanny) is finally taking her vacation time. That means that Steve and I are doing this parenting thing on our own. First world problems, perhaps – but with Lola we’re on 24-7. She’s up at 5 am, requires constant supervision, and requires full assistance for all of her basic needs. If we leave the room to get her a drink, or go to the bathroom, we risk returning to see her pulling the cables out of the back of the tv or trying to pull the flatscreen tv on her head. One night last week, it was a rough bedtime for all of us. She just wouldn’t go down. At long last, she fell asleep, and Steve slept with her to make sure that she stayed in bed. At 3 am, she was wide awake – like she was on cocaine or something – tearing apart her room, throwing toys, etc. Steve and I did what we could to settle her, but eventually I went back to bed and watched her on the monitor, which Steve tried to sleep. Cue maybe 15 minutes later (who knows how long really), Steve and I each bolted awake to hear her screaming. She wasn’t screaming in pain, but she was yelling. I ran into the hall, and the door to her room was wide open. We frantically took off in all directions to find her – hoping she was just in Liam’s room or something. Somehow, she had managed to open the child lock on her door, go downstairs, unlock the back door, cross the patio and the yard, and get into her pool. That gives me chills just typing that. I have no idea how she navigated the dark stairs/yard. None at all. Luckily her pool was about 90% drained – but still! How did she do it? At any rate, we’ve decided to do a few things to tighten up security around here. One of which is a gate installed at the top of the stairs. She even got past Riley! Anyway, I need to think of something else if I ever want to sleep again. Changing the subject.
Lola had an incredible year at school. She is in a specialized classroom with about six other children. There is one teacher, and three ed. assistants. She had days that she would scream all day long, she had seizure-filled days that would leave her slumped over, asleep in her chair. Post-surgery, they sure saw a different girl. Some days, she would give out dozens of hugs and kisses and be sweet as pie. Others, she would freak out, pitch a fit if she didn’t get her way, throw toys, and break the heat gauge in her classroom. Yikes. Those women were so patient with her. She did, however, go through two ed assistants this year…..coincidence? (Kidding – both those ladies loved Lola like she was their own). She surpassed all the goals on her IPP, and learned so much about the routine of big school, bus rides, and making new friends. She will be returning to the same school for grade two, and will have a male teacher! Wow. That’ll be interesting. Lola is the biggest flirt on the planet. Though we did not receive any assistance whatsoever from the principal of her school, I decided that Music Therapy wasn’t actually a “frivolous” expense, and that these children deserved to have the opportunity to work with a skilled therapist every other week. I paid for it myself. The kids loved music therapy, and I will do everything I can to ensure that they have this opportunity next year as well. JB Music Therapy rocks!
Which brings us to the summer – and the Western Open, and Silverstar and Fernie events that make up the Dunbar Summer Series which Steve has organized. The shirts, medals – everything – just top notch. If we make any money this year, Steve hopes to pay for the music therapy for Lola’s class (and their partner class next door) for the year. We also would like to look into getting Lola some switches to help her communicate her needs more effectively – for her school as well as at home. I can’t believe how many hours he’s put into securing sponsorship, and making sure that his events run smoothly, professionally, and are “the” must-attend events of the season. I really hope he gets the numbers he got last year. And some nice weather. Lola, Liam and I are going to be at Silverstar – and are excited to see all the work Daddy has done come to fruition.
And I think that’s pretty much where we’re at Lola-wise right now.
Lola, you are an incredible girl. You have overcome incredible odds to be where you are now. To think that most moms get to see their child take “first steps” once…we’ve gotten to see that a few more times over. You amaze me every day. The way you never stop trying, regardless of how many times you fall down. I’ve never seen more fight in a child. You will never give up – and don’t worry – neither will I. You are my happy place at the end of the day. You sometimes anger easily, but you forgive so thoroughly and completely, that you make me want to do the same with others. You give big love, with your whole heart. Thank you for making me try harder to understand you, and to be more compassionate with others. I love you forever, sweet girl. xo