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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[#AD]

Physio today was so fun! Jaxon had a great time wo

Physio today was so fun! Jaxon had a great time working on standing, sitting balance and stepping. His sitting is a lot stronger lately.
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Normally I don’t like to set physical milestone goals for them because that just isn’t fair (and ableist). But I do really hope Jaxon will be able to sit up one day. It will really open up selection of wheelchairs for him as well as helping with eating and so many things. Like riding rollercoasters even. 😉 So, I hope it happens :)
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Also you gotta scroll to the video of his cheeks shakin 😂😂 (Proprioceptive input) But those cheeks!! I can’t I can’t
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Axel worked on stepping as always, as well as some great righty arm stretch work and ramps.
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I love cheering on my little athletes 😍 @surreykidsphysio @kidsphysio

“Everything the light touches is my kingdom.”

“Everything the light touches is my kingdom.” 🦁⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Perry loves the new yard and having space to roam free (and chase squirrels) every day. He wishes it was a little warmer out right now 😬 but SOON it will be spring and we’re all so excited.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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What are you most excited for in 2021?⠀⠀⠀⠀⠀⠀⠀⠀⠀
(Besides the vaccine because 🙌🙌 thats my # 1!)

It’s #FeedingTubeAwarenessWeek!⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Feeding tubes are another way to eat food. It just bypasses the mouth.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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That’s it. That’s the post.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Eat, drink and be merry, whether you enjoy your food via mouth or tube. ✌️⠀⠀⠀⠀⠀⠀⠀⠀⠀
#feedingtubeawareness ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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📸 @rachellegregoryphotography

A beautiful view as I made brunch on Sunday 😍
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Our new house has so many more opportunities for the boys and us as a family. Before, it was generally impossible to get Jaxon’s stander outside. Sure, it was, but after long days of lifting and carrying the boys, a 50lb stroller in and out of the car and so many other back-aching tasks, carrying a 50+ pound stander down and up flights of stairs was too much.
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Now, it’s as simple as loading him up and rolling out the back door! Everyone can enjoy the outdoor space equally. 😊
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Owning an accessible (or, accessible for our needs now with renovation potential for future needs 😉) home around here is no easy feat. Not only financially but availability wise: there are not that many ranchers out there, and not all of them are accessible. I am so thankful this house came up - truly the right house at the right time for us. (Thanks to @vincepontaletta and @pontalettagroup for making it happen!!)
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It’s still about 8C outside (easterners, don’t laugh, that’s tough for us west coast snowflakes) but I can’t wait for summer and more time outside! 🥰☀️

Just a few quick videos from physio yesterday 😍

Just a few quick videos from physio yesterday 😍 @kidsphysio @surreykidsphysio
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Jaxon’s trunk be lookin fierce these days, and Axel’s stepping is improving. When he’s walking around, his hemiplegic gait is quite noticeable (dragging right leg around instead of lifting at hip). This is to be expected especially when he’s trying to get somewhere quickly. However these stepping up high exercises are so needed to strengthen the muscles needed to lift up his leg as well as promote good hip health, which is so important in cerebral palsy to help avoid pain and surgeries down the road if we can.😊
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My little athletes! 💪
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This month has a lot of mobility related stuff too: fitting for new AFOs for both, which will also mean new (bigger) shoes 👟 AND!!! Finally!! After months of waiting, Jaxon’s wheelchair fitting appointment!
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We won’t get to take it home this month as it will have to be ordered but I’m so excited for him to be assessed for a wheelchair. I really hope there is something that will support his spine properly. He will need it when he goes to preschool in Sept as unfortunately, he won’t be taken in and out of it to play as I do at home (they don’t lift). So it’ll need to be supportive and comfy since he will use it for most of the day.
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(Even though right now I’ve been told there’s no funding for daycare/preschool aides so the boys can’t go blah blah. I am respectfully fighting the crap out of that decision so 😬 TBA on that... lol)

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NICU Progress Update

Medical Motherhood• NICU Mom Life• Physio, OT + Therapies• Tube Feeding

CP, ROP, G Tubes and More (Oh My!) – NICU Progress Update

August 3, 2018

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