Are you even prepared for this amount of wholesome

Are you even prepared for this amount of wholesomeness?!
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Perry isn’t a “kids dog.” He says hard pass to that. He’s barely an “adults other than us” dog. Or an “other dogs dog.” 😅
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Lately he’s been inching closer and closer to the boys when we play on the floor (designed to get my attention), cautiously watching them. (Yes, I always supervise him around the boys since he does have reactive behaviour patterns.) Today he laid down right beside Jaxon and was staring at him so intently playing with some blocks that I thought he might want to play too. 😂
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So I put some blocks between Perry’s legs too and he was so excited, he licked my face. Then he went back to studying J… presumably to learn how to play with blocks. Lol obviously not, but he’s like my toddler in every other way, so why not this too. 🐾
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I love Perry 🥰

Yesterday the boys had their first hippotherapy se

Yesterday the boys had their first hippotherapy session! (Hippotherapy = therapeutic horseback riding 🐎) It was AWESOME!⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I’ve been trying to get them into this program for almost 2 years. Part of that is a minimum age requirement and part of that is waitlist and cancellations due to the pandemic last year. Anyway, it’s so rewarding to finally see it happen!⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I also found out part of the cost is covered by our local (public) therapy centre which is helpful, so it’s a bit less expensive than I originally thought. The program runs from now until December but I’m hoping I can get them into private hippotherapy for next spring, too.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Jaxon didn’t love the helmet and face shield at first 😅 but as soon as he was on the horse, he loved it! He even fell asleep near the end because they walked so far and I guess he was so calm. The program staff said he had a great connection to the horse. 🥰 He’s been absolutely BEAMING ever since that morning!⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Axel - well, he’s been so excited all week to go and wouldn’t even eat breakfast cuz he just wanted to “go see horses!!!” As he told me immediately after waking up. But once there, I think it was a bit overwhelming. In the end, watching Jaxon have a great time gave him the courage to try it out and he ended up loving it too, but wasn’t able to ride long since our time was up (hopefully next time he is comfortable enough to just hop on!).⠀⠀⠀⠀⠀⠀⠀⠀⠀
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The rest of the day I heard how fun it was from him and how he wanted to “go back and see Grimly” (the horse’s name) and he even said “bye Grimly” when we left 😭😍⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Besides fun - it’s also great core/muscle/sensory therapy!⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Then it was off to private physio immediately after and a bunch of errands. I drove for about 4 hours total 😅 I was ready for a 🍷 (and a new Spotify playlist 😂).⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Here’s to jam packed Thursdays until the end of 2021! 🎉

GUESS WHAT⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀

GUESS WHAT⠀⠀⠀⠀⠀⠀⠀⠀⠀
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We have this awesome friend. Well, many awesome friends. But this friend in particular has given us the best gift of all: TIME⠀⠀⠀⠀⠀⠀⠀⠀⠀
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She watched the boys overnight so we could go out for dinner and even stayed in a hotel overnight and slept without a baby monitor next to my face, and the expectation that one or more children are gonna wake up at 3am screaming. 😬 If your kid is a chronic bad sleeper, then you know the trepidation of going to bed every night expecting to be woken up (and not able to go back to bed). It does things to your mind over time.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Anyway, we had the best time! We went out for dinner, then a beer, then for late happy hour at a bar… It was great except 2/3 of those places closed hours early because there were hardly any customers (possibly related: BC’s vaccine passport went into effect Monday). Many other places we wanted to eat at weren’t even open.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Anyway I drank my fair share to stimulate the economy. Not all heroes wear capes, and sometimes they stumble. 🍷🦹‍♀️⠀⠀⠀⠀⠀⠀⠀⠀⠀
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It honestly felt weird being out together at NIGHT. I was like… do we even have children? Where are they? Why is Chris with me right now? Why are we walking without pushing a stroller right now? Did we leave them in the car? Is this child screaming in the restaurant mine? And so on. 😅⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Weird in the best way. We are so thankful for such an amazing friend (who is more like family!) and gift. ❤️❤️❤️

Just a quiet moment at home. Sitting in the @theup

Just a quiet moment at home. Sitting in the @theupseat is a great way for Jaxon to enjoy playing upright while also strengthening his core. Of course he needs some balancing help though.

Axel said, “Going to sit behind J and hold J.” As he sees me always sitting behind Jaxon and stabilizing him either with my hands or propped against my leg, etc.

He also gave him a little hug. So sweet 🥰

Jaxon Bug getting stronger in sitting all the time

Jaxon Bug getting stronger in sitting all the time. 🥰 Every day he gets more curious about the world, more determined and more freakin cheeky honestly… He may be legally blind but he sure as shit knows when there’s stuff on the dining table next to him and is sure to swipe it to the floor just to hear the crash and laugh. 😂 Such a butt.

Jaxon, you amaze me every day with your sheer tenacity to keep going, even with what seems to be a new medical emergency or diagnosis every few months. Grown ass adults aren’t as strong as you. ❤️

Well OKAY 🥰 Jaxon’s first sorta-independent s

Well OKAY 🥰 Jaxon’s first sorta-independent sorta-steps.

Yesterday was rough as J was handed yet another diagnosis I’ve feared for years, serious and with serious consequences. However there are still questions and things to figure out. I’ll leave it at that but it’s difficult.

I just wanted today to be fun. We’ve been doing a lot of stander time and physio lately but I haven’t done as much with this KidWalk walker so I pulled it out today. We aren’t actually able to get any equipment funded for Jaxon (besides his wheelchair), because in BC it’s a wheelchair and that’s it (unless your wheelchair was super cheap, like less than $3,200, which most aren’t).

I’ve talked about the lack of funding for pretty much anything that disabled kids need to thrive in BC many times so I’ll stop my rant there. But I mention it because the only reason we have this walker is that it was loaned out to Axel over a year ago, and he doesnt need it anymore, and basically we didn’t return it and no one has asked 😅 So I kept it for Jaxon to use even though we’re “not supposed to” because “he can’t walk.”

Well duh! I’m not putting him in here expecting perfect alignment or steps or anything. It’s just for fun and strength building/weight bearing too. He likes being in it and moving around so why not?

Well today it seemed like things clicked and I think he really was trying to take steps. He got super excited and happy doing so. Must feel cool to move in a different way than he’s used to. I love it!

If you watch my stories, then you know I’ve been

If you watch my stories, then you know I’ve been struggling a lot with lack of sleep, for many reasons. The main one is a little turkey with a name starting with J 🙃 It’s not his fault. He’s a kid. And has never slept well from day 1. Probably due to his CP (sleep issues are common). Not his fault. But it wears on ya.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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The other reasons are self made. I stay up late working, because I have to, and then I’ll stay up a bit later after I’m done for the night because I want to watch a tv show. Or have a drink. Or listen to music. Or read. To have some time that’s just mine, that doesn’t belong to anyone else.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Should I just go to bed as soon as I’m done working? Obvious answer is yes. But the extra hours I stay up during the week are the only times I have an identity that’s just for me.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I miss that. Having an identity that’s not dependent on other people (as natural as it is for that to happen after kids).⠀⠀⠀⠀⠀⠀⠀⠀⠀
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It’s no one’s fault. It’s just a Thing That’s Happened.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I have a lot of struggle-y things going on in my life, not related to our family, that I don’t share here. It’s not my place.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Just a reminder that what is posted on social media is never someone’s entire life, even people like me who bitch all the time. There’s always more, unposted bitching in the background 🤪😂 (And joy too.)⠀⠀⠀⠀⠀⠀⠀⠀⠀
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People say “prioritize your needs”, but that’s not possible for all. I can’t. My husband can’t. After we care for the kids, work, clean the house, wash the dishes, cook the food, walk the dog, what time is left? I rely on grocery delivery apps (so helpful) because I can’t even leave the house for 30 mins to do it myself.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I’ve been thinking a lot about identity lately. What even are my needs? 🤷‍♀️⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I’m looking forward to being a Real Person again someday, years from now.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Hopefully I remember how to be one by then.

A few of my fave shots from physio last week @surr

A few of my fave shots from physio last week @surreykidsphysio 🥰

The @theratogs.hq suit is so great for J’s back! I love how it supports his posture. He can now sit for a few seconds by himself, too. Super fun 🤩

Axel is always involved in everything. I love the shot of him looking under the balance board J is sitting on. He was like “how is he moving like that?” 😂

Ax Man rocked his balancing as well as some sneaky righty arm OT too.

We ❤️ physio days! 🎉

(#ad) We lived in our last home for almost 7 years

(#ad) We lived in our last home for almost 7 years and I never hung anything on the walls. 😅 I have a vast assortment of picture frames and I think around year 5, I made Chris hang them all up on our walls. Stock photos still inside, of course.
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I thought having them on the wall would force me to buy/print out photos and swap out the iStock families for our own. Spoiler alert: it did not. 😂
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Moving into this new maybe-forever? house, I knew I wanted to change that!
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Enter: @mapiful
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I love my new Starmap poster from Mapiful. It's our wedding date and location, so these are what the stars looked like at the exact time we got married, where we got married. How cool is that?
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I love seeing it every day and being reminded of what's built our home: love. 🧀🧀🧀 Cheese alert!
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But seriously, if you want to snap up one of these cool posters, use my exclusive discount code "thefightingirishmartins10" for 10% OFF your entire order - expires July 31!!
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👉 Head over to @mapiful and check them out.
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https://imp.i127447.net/6bArGQ
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#mapiful #yesmapiful

Axel-man mowin’ down snacks in the waiting room

Axel-man mowin’ down snacks in the waiting room at Gen Surg, right before getting his G-tube taken out. 🤯 (He was super hungry today and ate everything in sight lol)

While any form of eating is obviously totally ok - G-tube, J tube, mouth, TPN, whatever! - I am happy for this milestone for Axel. Mostly because food is deeeeelicious and I’m glad he (and J!) get to taste the world and enjoy all our fave things. 🌭 🧃🍫🍿🍩🍪🎂🍤🍣🍟🍕🍔🥗🥨🧀🧇

Spoiler alert: eating and drinking a lot immediately before getting a G-tube taken out is not recommended. I’ll let your imagination figure out why. 😅😂…💥

From jet vent for 3 months, to working on eating the rest of the time in NICU, to being force fed and not taking a single drink or bite by mouth after NICU discharge to 18 months old… to working with @gieaters for the last almost TWO years (!!!)… to now at 3.5 years old, button out!

I am so glad I trusted my gut and hired @gieaters to help us. (And for the generous donation at that time that made that even possible!) Where I live, the public system would not help the boys eat by mouth and often told me there was no point.

Well, I have 4 words to illustrate the point: Rocky Road Ice Cream 🍦

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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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