Shots from last week’s physio I’m just getting

Shots from last week’s physio I’m just getting around to 😊
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It’s so good for them to stretch their muscles, use their brains and bodies in different ways, and for me to learn new exercises. Since so much of learning comes from gross motor skills from baby to toddler age (exploring the world, etc), I really feel our private physio is more than just movement for their bodies. It’s powering their brains and discovery too. (OT too of course.)
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Jaxon’s little leggies are getting so strong. A few months ago he couldn’t stand without leg gaiters. Now he can push through his legs all on his own with just a bit of upper support. He drops up and down, but is able to push himself back up which is the part that really matters. The video at the end shows this best, although he was a bit done by this point (it was the end of session and he was over it lol).
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I have it on my mind to look into SDR for Jaxon especially and potentially both of them. However I’m not convinced that Canada would be the best place for that (talented surgeons but of course I want the best- Dr Park... CP families know what I mean!!). And that means a helluva lotta 💰 😬 Naturally. But we’ll see. Baby steps into the research process...
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Axel worked a lot on stepping and balance in this session too! He is eager to walk but balance is a huge issue for him with his right side hemiplegia so this helps a ton.
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As always, proud of my strong boys. 😍

I've been thinking about ableism. And British Colu

I've been thinking about ableism. And British Columbia. And our election in a few weeks here.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I think about how...⠀⠀⠀⠀⠀⠀⠀⠀⠀
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❗️There hasn’t been a funding increase for the At Home Program (for disabled children) in over 30 years.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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❗️How many families have to choose between getting AFOs (ankle/leg braces) to ensure their child with cerebral palsy’s feet and ankle bones form properly, avoiding a lifetime of pain and multiple extensive Orthopedic surgeries... or putting food on the table. Because no, those aren’t covered and range from $500-$5,000 (depending on complexity) out of pocket each 6-12 months per child.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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❗️How the public PT, OT, vision and SLP early intervention centres have been closed since March and likely will be closed until the pandemic is over (2022?!). (And, they're largely funded by private donors anyway, not the gov.) Virtual offerings are limited and not suitable for all children. Private centres have been allowed to reopen since July. The public ones could too, there is no law saying they can’t as long as they have PPE, but they’re not. They’re choosing to not provide medical care to children.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Because it’s seen as optional. "What’s the point?" is the overwhelming thing you’ll hear as a parent of a newly diagnosed child (cerebral palsy in our case but can apply to many situations).⠀⠀⠀⠀⠀⠀⠀⠀⠀
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“They’ll never _____.” So what’s the point, is the unspoken ending.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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It’s not about forcing kids to walk or basing value on physical abilities. It’s about learning stretches and exercises that help them reduce pain, bone deformities and therefore, avoid future surgeries. It’s about monitoring hip dysplasia. It’s about empowering kids with sensory regulation techniques in OT, and helping them communicate, either verbally or with AAC, in speech.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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It’s about including them in society.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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>> CONTINUED IN COMMENTS >>

Thursdays are always fun because our morning is sp

Thursdays are always fun because our morning is spent at @kidsphysio 😍
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Plus, these outfits. I’m a sucker for a baby in a collared shirt 😍😍💋
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Jaxon is getting so tall and strong! We used leg gaiters for the exercise in the video only because the focus was the trunk, but otherwise we don’t use them as he can bear weight fully on his own legs now. Still not for long, but we are building up strength and endurance. 😊 And, he really likes the feeling of being “up”! I think his brain is making some connections there lately because while it’s challenging, he does enjoy it most of the time.
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He also had a terrible time doing sitting as you can see from the pics 🙄 Haha. He is very ticklish which is cute on its own, but also useful in physio. Sometimes tickling his sides or back can get him to use those muscles to pull himself back up into sitting or standing. While having a laugh fest doing so. Always a win win. 😍
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Axel continues to amaze with his balance, standing and gains in leg strength the last few months. Back in June he couldn’t stand up from a squat. And now he can all day long and is taking 2-4 steps at a time between objects. He is very driven to explore the world around him which is a big part of it.
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Axel is actually getting his walker tomorrow! He’s gonna love being able to explore more with it!
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It’s a long weekend ahead here for 🇨🇦 Thanksgiving! We’re staying home in our bubble, but the extra time will be nice. I’m really behind in my writing work with all the appointments this week so 😬😬😬 catch up time and long nights ahead.

It’s #WorldCPDay! 💚 A day devoted to raising

It’s #WorldCPDay! 💚 A day devoted to raising awareness of cerebral palsy and the 17 million people worldwide living with CP.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Cerebral palsy is, in short, a result of damage to the brain either during pregnancy, birth or within the first year of life. There are many causes but common ones are lack of oxygen (especially during birth) or stroke.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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The boys had Twin to Twin Transfusion Syndrome in utero which meant they shared all blood flow. Identical twins share a placenta but are separate entities. In TTTS, both the placenta and my body thinks there is only 1 baby: they share all blood flow like it’s going through both of them at once. This is very dangerous and why 99% of non-surgically corrected cases do not survive (I was not able to have the surgery, a long story).⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Because of the shared blood flow, many issues arise from heart, liver and more and especially: the brain.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Within the first day of life after being born at 27 weeks (due to hydrops/TTTS complications), both boys had massive brain bleeding (hemorrhage). They both had bilateral grade 4 bleeds (not terribly common...).⠀⠀⠀⠀⠀⠀⠀⠀⠀
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These extensive bleeds are enough to cause death for many preemies on their own, and the boys also could not breathe (jet vent), were in liver and kidney failure, and many more issues. We were told they wouldn’t last out the week.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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And yet... here we are!⠀⠀⠀⠀⠀⠀⠀⠀⠀
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2.5 years later with the sassiest boys. ❤️❤️⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I started posting about them because I was proud of them, but also to “raise awareness.” I thought that was a good thing. And it is- when done well.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I hope in the future they will both be proud of all aspects of their identities, including their disabilities.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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But it’s important to remember: it’s not their job to raise awareness. It’s nondisabled people’s job to learn on their own, and help create an accessible, inclusive world. 💚

[#ad] Today on the blog, I'm sharing ev-er-y-THING

[#ad] Today on the blog, I'm sharing ev-er-y-THING about my journey to open my shop! I talk about how I even got the idea for it, how I got started, how I learned all the stuff I needed to, what struggles I ran into, and what keeps me going through hard times...
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AND. How the shop, my charitable donation idea and this passion I have for making stuff came to be, all because of the too-cute-to-resist Cricut Joy pictured here on my desk. 😍 And the surprising way it came to be in my possession...
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I'm so thankful to be teaming up with Cricut on this post as they support entrepreneurs around the world creating businesses out of their creative passions. 😊
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So click the link in my bio (or this one 👉🏼 https://lnk2.io/wtk2t2W ) to read ALL about how I started my shop and how you could too...
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#cricutcreated #CricutMade @officialcricut

I wish this was sponsored by @doritos (but it’s

I wish this was sponsored by @doritos (but it’s not). Axel and Dad late night snackin’ 😂
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When you have a kid with severe oral motor feeding difficulties and then severe aversion issues resulting in 100% tube feedings..... aaaaand then he starts eating solid food months ago, aaaand now his fave snack is spicy buffalo Doritos. 🤯 (And he doesn’t even want a drink with them. Whereas I can’t even handle 1 chip.)
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Is it the healthiest snack? Nah. But when you have such a traumatic history of feeding, reflux, tube feeds and aversion - hell ya little buddy, you can have all the Doritos you want! 🎉
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(Also fitting that Axel is wearing his pizza, burger, nacho PJ pants - all his fave foods 🥰)

I want to acknowledge this amazing dude’s hard w

I want to acknowledge this amazing dude’s hard work over the last few months. Axel works hard too of course, but Jaxon has several more cards dealt against him that make everything a bit tougher for him. And yet, works hard every day to play, grow and learn - and is happy about it most of the time. 😊
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Before March, Jaxon couldn’t stand up without his leg gaiters (the blue Velcro things seen in old pics). And he needed full trunk support. Now, he can stand (briefly) with distal support at ankles/shins and shoulders, or just at hips (pictured here). He can lock his own knees and bring his trunk up independently- as well as full head control which he also didn’t have in March.
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All this hard work has ensured his hips stay healthy (no displacement), muscles and tendons stay nice and stretchy (to what spastic CP allows for), so that we don’t need to use pharmaceuticals to control his tone (at least so far, we will always reevaluate to see what’s best for Jaxon as he grows - however for his unique case, starting those medications comes with a high risk of seizures for him so we are trying to delay as much as we can).
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I could go on and on, but Jaxon is a STAR ⭐️
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And Axel! I mean! Just look. He loves being able to move around more. We’re working a lot on his hemiplegic gait (dragging right leg/lifting right knee). AND — is now taking 2-3 independent steps! 😮
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How did I end up with both the cutest boys in existence AND the toughest toddlers around? 💯
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@kidsphysio

My trip with Perry was sooo exactly what I needed!

My trip with Perry was sooo exactly what I needed! If you saw my stories then you know we spent the whole time sleeping, snuggling, eating pasta in bed, walking along the river and even out to a wine bar on Saturday night - patio-side dog-friendly table included. (Yes, we shared the gouda.) We spent the weekend in Chilliwack and it was quite smoky but we still got out and did a lot.
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It was such an excellent recharge. If you’re in a similar always-bordering-on-burnout mode for both professional and personal life reasons like me and have the ability to get away for a few nights, do it. Also you should get a dog.
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Perry was amply spoiled and now at home won’t let me out of his sight. And is about 100x snugglier than before, which is saying a lot for Perry. He is totally the best dog that’s ever existed in the entire world and if you say otherwise well then you’re lying.
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At one point walking along the no-sidewalk roads behind a truck stop and between 4 gas stations out front of our hotel (#highendvacaydestination 😂), a woman on a bike passing by said Perry and I “look like we’re a good team.” 😍 I mean, would it be nice to vacation with my husband and/or kids? Sure, sure. But vacationing with Perry is my favourite kind of company sometimes: the kind that doesn’t talk back. 😘🍷

Oh hey it’s ya girl, just wondering how I got so

Oh hey it’s ya girl, just wondering how I got so damn lucky. I know I know, in direct opposition to my bitchy stories posts where I get all bitter and shitty toward the world. Don’t worry, that’s still there too!! I wouldn’t go off and get too toxic positive on ya.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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But it’s not all doom and gloom. Well, correction, when I don’t sleep well, it IS doom. Total absolute doom and the world feels insufferable. But after a solid 5 hours? I’m GOOD (usually).⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Today Perry and I head off on our 2 nights away. I can’t even believe I’m doing this. Honestly I did feel guilty sticking my husband with the boys all weekend and taking off on a selfish trip of late night hash brown eating in bed and tv show marathons and nature walks with Perry. (<—- dream vacay game plan)⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Buuuut then I started thinking about all the shit I do and got a bit conceited for awhile.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I started working again part time (at night) in February. And then we all know how March went (and life thereafter). COOL COOL.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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In that time, I’ve gone from trying to build my writing business up again from nothing (having stopped in 2018 when I prematurely delivered the boys), to now having a team of 2 amazing women to rely on, earning more than I did at my last fulltime job (+ not working fulltime) and more work than I can handle. I don’t have everything about business figured out (VERY much to learn) buuuut it’s been 7 months so, I think some credit is due.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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AND I opened my shop which is my true passion project and to give back to others - SOLELY thanks to your support on here for making that successful too. ❤️⠀⠀⠀⠀⠀⠀⠀⠀⠀
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SO YA. I’m gonna stop feeling guilty and go with “I earned this” and Perry and I are gonna live our best lives this weekend! He still doesn’t even know!! Cuz he’s a dog. But when we check into our hotel ohhh boy he’ll know. He’ll hop on the bed and demand a warm hash brown. SAMESIES PERRY 😍😍

At least...⠀⠀⠀⠀⠀⠀⠀⠀⠀ At least...

At least...⠀⠀⠀⠀⠀⠀⠀⠀⠀
At least...⠀⠀⠀⠀⠀⠀⠀⠀⠀
At least...⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I don’t need to complete those sentences. Anyone else whose been through the NICU/medical complexity life can fill those in with their own bullshit. I’m sure you’ve heard those words uttered at you too before, right?⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Here’s the problem: at least ain’t shit.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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“At least they’re alive.”⠀⠀⠀⠀⠀⠀⠀⠀⠀
“At least you get to rest.” (Uhh yeah cuz the NICU is Club Med?)⠀⠀⠀⠀⠀⠀⠀⠀⠀
“At least ... x 1000”⠀⠀⠀⠀⠀⠀⠀⠀⠀
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And you know what? Yeah, there is tons to be grateful for. I will never take my boys lives for granted.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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But when you tell a NICU mom “at least” anything, what you’re really saying is, “I don’t like to think of difficult or sad things so I’m just going to ignore your pain and put a big shiny bow all over it.”⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I get that many people don’t know what to say. Honestly? Anything but “at least.”⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Don’t come at me with your at least rose coloured glasses bullshit. I still get these comments TODAY. (IRL)⠀⠀⠀⠀⠀⠀⠀⠀⠀
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The NICU makes you feel crazy. Like maybe you’re imagining it all. And when someone tells you “at least” something, you doubt yourself even more. “Maybe it’s not that bad my baby’s almost died in front of me 5 times this year! Hmm I guess I’m overreacting a little.”⠀⠀⠀⠀⠀⠀⠀⠀⠀
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So next time you encounter a NICU mom and you’re tempted to trot out a tired silver lining, don’t bother. Don’t even say anything. Silence is better than that.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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That’s my take on #NICUawarenessmonth. Be aware of not being a dick. Cuz I still remember all those dicks. Peace ✌🏼

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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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