Here's the post I've diligently tried to avoid wri

Here's the post I've diligently tried to avoid writing for 14 months.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Yep, I'm Ro Ro Ro-ing my boat gently down the polymerase chain. 🚣‍♀️ ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I'm not making any stops on the way to KokoRo. ☀️ ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I've joined Vancouver's latest punk band, The Variants of Concern. 👩‍🎤⠀⠀⠀⠀⠀⠀⠀⠀⠀
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But seriously, I have COVID-19. 🦠⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I've already completed all contact tracing requirements. We're all safely isolating at home.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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We're 18-39. The ones "ruining this for all of us," according to our illustrious Premier. We followed all the rules. FOR 14 F🤬ING MONTHS. We don't see anyone. We don't go anywhere. Yes, we go to the grocery store and we've been to a restaurant a few times (and always felt safe), and of course I'm always at the hospital for appointments for the boys.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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So how?⠀⠀⠀⠀⠀⠀⠀⠀⠀
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My husband is an essential, frontline worker. 🤷‍♀️ Or maybe I touched a contaminated jar of spaghetti sauce one fateful day. We will never know.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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My point is simply that while workplaces are doing all they can, it can never be enough in the wake of neglectful government inaction on policies that turn around and blame "partying young people" categorically, instead of addressing the bungled and slow rollout of vaccination campaigns.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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But "we're ruining this for everyone."⠀⠀⠀⠀⠀⠀⠀⠀⠀
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We have 2 immunocompromised, lung-diseased former preemie children we have anxiously protected for 14 months. And now, what we feared has happened.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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But... we're the ones ruining everything.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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To be clear: I'm not worried about us.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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[CONTINUED IN COMMENTS]

That post-virtual OT feels 🤣 Moments after I to

That post-virtual OT feels 🤣 Moments after I took this quick photo, Perry slid down in his sleep and fell off the couch... not for the first time. My graceful, elegant puppy. 😬⠀⠀⠀⠀⠀⠀⠀⠀⠀
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This pic is also a good representation of how we’re all feeling lately. I haven’t posted much because... meh! What’s life in an endless 13 month lockdown if not full of excitement? It ain’t, and life is mostly “same old same old” lately.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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It’s not a bad thing, but it’s not something to shout to the world about either.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Just reeeeeally wishing BC would get its shit together with vaccines, restrictions that don’t contradict each other and just general fuckquackery. Let’s mask up, stay away from people and end this thiiiiing.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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My boys have missed enough therapy opportunities and other (social, recreational, medical) opportunities. Because why? You haaaaad to go to that house party for “your mental health”?⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Well I don’t give a fuck about your mental health. 🤷‍♀️⠀⠀⠀⠀⠀⠀⠀⠀⠀
You don’t care enough about vulnerable people like my boys to not party?⠀⠀⠀⠀⠀⠀⠀⠀⠀
Then I don’t care about you.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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(NOT talking about all the essential workers being exposed or those w/ large households / other socioeconomic factors. That’s not their fault. I’m talking about the little shitheads whining about their mental health when really they’re just too selfish to give up their social lives to help others.)⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Is there some kind of post-lockdown rage management, “how to not hate people” class out there I can sign up for orrrrrr?? 😅⠀⠀⠀⠀⠀⠀⠀⠀⠀
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In the meantime, I’ll just be here, mommin’, business-in’, and waiting (im)patiently for my province to unfuck itself. 👋

[ID] Jaxon, a white toddler wearing a patterned romper, is laying on his dad’s chest, asleep. Chris, his dad, is also asleep leaning back against the couch. Both have their arms draped over Perry, a Doberman Pinscher who is also asleep. They’re all cuddled on a black leather couch with the afternoon sun coming in the window.

Happy Easter from my favourite peeps 🎉 Honest

Happy Easter from my favourite peeps 🎉

Honestly I’m not really a “holiday person”, nor religious, so today is just about chocolate for me. 🍫 I could have put in more effort for the boys too but mehhh. I got them some chocolate, and Chris’ parents dropped off some awesome Easter baskets filled with stuff for them. We’ve had fun eating chocolate before lunch (whoops) and just spending time together.

It can be a challenge for me to schedule in family time with all 5 of us (incl Perry). I work every day. Today is no exception, although I’m going to attempt to work during nap time then put away the computer so we can all go for a walk later.

I’ve been thinking a lot about what life will be like when things “return to normal”(ish)... maybe this year, maybe next year in 🇨🇦? What will we do? I don’t even know how to have a conversation anymore. 😬 It’s so weird. I feel like I could live this way forever. Not like, happily. But... mediocre-ly? Sometimes change is scarier than a crappy situation.

Anyway. Happy Easter if you celebrate. ❤️

Explaining how disabled children are denied access

Explaining how disabled children are denied access to daycare in BC. Process of getting daycare, why many are excluded, and how much of a fight it is to get it (with no guarantees). Also how ridiculous the process is and keeps parents of disabled children unable to work and many in poverty. This applies to BC only as each province is different.

Can it work out sometimes and disabled kids get daycare and their parents can work? Of course. But my point is the arduous process and that many, many disabled kids in BC do not have access to early childhood education opportunities like their nondisabled peers AND the perpetuation this has on poverty among families with disabled children.

#TextsFromMyShunt — Wouldn't it be nice if your

#TextsFromMyShunt — Wouldn't it be nice if your shunt could tell you when it was failing, about to fail, or when you should get it checked by neurosurgery... BEFORE launching a person into an emergency health crisis requiring urgent brain surgery as the only course of action?
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We have self-parking cars. We have Bluetooth speakers. We have powerful computers inside the phones in our pockets. We have video calling around the world. We have space missions and robot guided surgeries and implantable glucose monitors and pacemakers and so much more.
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Yet the shunt, the main treatment for hydrocephalus, has not changed much from its original design in the 1950s. It's a valve that pumps CSF (cerebral spinal fluid) around yer noggin to keep you alive, as having hydrocephalus means your body cannot do this naturally on its own.
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CT scans are sometimes unreliable indicators of performance, so are MRIs. Fluid taps and pressure monitors can only tell docs so much. Sometimes, the only way to see if a shunt is working is to drill a burrhole in the skull and go in with a scalpel and take a little looksie.
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In 2021, when my $100 Fitbit can tell me what my heart rate is 24/7, the only way to check if a critically-important, extremely serious medical device implanted in the brain is working is to look at it with EYEBALLS. In the OR.
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It's time to make a better shunt. If I can buy a "smart" thermostat, alarm system, phone, speaker, and Bluetooth lightswitches, it's time to make a smart shunt.
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#NoMoreBrainSurgery #NoMoreBrainSurgeries #hydrocephalus #vpshuntrevision #vpshunt #pediatrichydrocephalus #neurosurgery #pediatricneurosurgery #TheFightingIrishMartins

If you know, you know. What these blue blankets me

If you know, you know. What these blue blankets mean. An extended stay in Vancouver’s best Airbnb.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Without going into too much detail, I thought Jaxon was having a shunt(s) malfunction. Fast forward a familiar series of Traumatic Events™️, and a few new ones, we ended up in “the big room” again with a lotta medical peeps and a lotta heavy duty meds and a lotta tubes and a lotta worry.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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We’re staying in PICU for a bit. Not that I’d ever wish for his 9th brain surgery, but I was kinda hoping it would be something “simple” like that. Simple to us. Familiar. It’s not. It’s another thing entirely. And, that’s devastating. For obvious reasons. Does he need another serious “thing”? It’s not fair.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I’m still not sure if it’s comforting or depressing that I recognize most of the nurses and docs in the ER, and they recognize me and J. It’s comforting because they’re all so kind and amazing. It’s depressing because who wants to feel at home in an ER?⠀⠀⠀⠀⠀⠀⠀⠀⠀
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The RoRo policies are making things quite annoying though I must say (though I understand). I’m not allowed to leave the room at all. Only to pee, and if I do, I have to tell someone so the bathroom can be sanitized. I can’t even go get a coffee or go for a walk.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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It’s 4am now and I haven’t eaten since 10am yesterday. I tried to order Subway delivery and a nurse offered to pick it up outside for me, but in that moment Jaxon had another urgent situation so, the delivery left. The nurse very nicely brought me some toast and yogurt which I inhaled (only once there’s no one in the room otherwise it’s mask on).⠀⠀⠀⠀⠀⠀⠀⠀⠀
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And now, urgent situation over, I’m going to try to sleep for 3hrs. We’ll see how well that goes, even though I’m exhausted. Too much stress in the past, present and future makes that tough.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Made it 51 weeks without an admission. Just when you start to relax, this life pulls you back into the vortex. 🌪

For the people who say Jaxon looks like me, I pres

For the people who say Jaxon looks like me, I present to you Exhibit A 😍⠀⠀⠀⠀⠀⠀⠀⠀⠀
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(Please ignore Jaxon’s dirty chair! Particularly messy mealtime. 😬 Getting a power washer soon so I can blast this thing sparkling clean. It’s so tough to clean it properly!)⠀⠀⠀⠀⠀⠀⠀⠀⠀
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[ID] Jaxon, a white toddler in Thomas the tank PJs, is sitting in his positioning chair. His dad is on his right side. They both have their mouths open laughing and to me, they look like the same exact face. Mega heart eyes!

What a DAY. 😳 Today was a full appointment day,

What a DAY. 😳 Today was a full appointment day, and just tiring. Up and out the door at 6:30am to get downtown for new AFO (leg brace) casting ($$$), then we had a few hours to kill before the next appointment. I gave the boys lunch then drove around aimlessly for awhile (hoping for a nap).⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I got a coffee and it was lovely driving around downtown. Tall buildings and terrible driving have always calmed me (not a joke). Then it was over to Children’s Hospital for an hour of circling the parking lot to find a spot (also not a joke).⠀⠀⠀⠀⠀⠀⠀⠀⠀
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The afternoon appointment was to get Jaxon’s first wheelchair! I was so excited for it because I thought a) it would be a seat + frame combined and b) that he would try them out today and see what fit best. But neither of that happened as it was just me deciding between 2 frames, that a custom seat will go on top of. And he was quite melty the entire appt 😬⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I haven’t been totally thrilled with his seat we have (high chair) so I’m dubious. But trying to keep an open mind.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I don’t have a choice in anything other than what they say. Also not sure what it will cost yet.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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But it won’t be able to go on trails or dog walks, which saddens me. He still fits in our jogging stroller for now.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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In BC on AHP, a manual wheelchair is not fully covered (maybe in some cases?). A stroller or outdoor mobility aid? Nope. Standing frame? Nope. (We have one ourselves.) Walker? Nope. Any other mobility or sitting structures? Nope. AFOs? Partially only.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Because why would disabled kids need to do anything except be pushed by someone else to medical appointments, right?🤦‍♀️⠀⠀⠀⠀⠀⠀⠀⠀⠀
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If you read the discourse about #BillC7 right now, you’ll realize Canada’s criminal level of ableism at the highest levels. BC’s children’s system is an example of that too. I have much more to say on this topic soon.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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For now: Work. And wine. 🍷

We had a productive and lovely Family Day holiday

We had a productive and lovely Family Day holiday weekend. Chris spent most of it painting and building my office. I’m so excited for how it’s coming together. It’ll be awhile yet before I’d consider it “done”, but I’m really excited to have a functional, cute office and shop space, and to decorate it all.
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Another bonus of moving has been of course having more space, including for the boys’ things. Their aunt Stephy hand painted this amazing Dr Seuss table and stool set for them ages ago, but it didn’t fit in our living room in the old home. Now it’s the perfect addition to our new living room!
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Axel can sit on the stool himself but of course J needs help. It’s a good height for me to hold J in my lap and play on the table with Axel, too.
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Scroll to the last pic to see the amazing art she painted!! We love it.

What does your self-love routine look like?⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I like to set aside 15 minutes a night to light a candle and wind down with some @dove Nourishing Body Care. Just pick up at your local @dollartree, light a candle and take a few deep breaths. Click my #linkinbio for more ✨ #DovePartner #LoveDove #BeautifullyNourishedSkin #LoveistheInfluence ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Cortical Visual Impairment

Physio, OT + Therapies• Recommendations

Toys for Children with CVI (Cortical Visual Impairment)

January 26, 2020

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