s: hello and welcome to our night routine
h: what a professional looking angle this is Shane
s: I don't know if the internet needs another night routine video
s: but we're gonna show you ours h: yep
s: it's very simple, just like our morning routine
s: I think people expected that it was gonna be like
s: and then, they remove all of his bandages, and then they reapply the gauze
h: uh huh, but it's not s: it's not very medical
h: no
s: but some nights our night routine begins with a bathing
h: oh my god, can we just call it a shower?
s: my nurse and wife will be bathing me now
h: sometimes it's a sponge bath, sometimes..
s: it's an armpit only.. h: no, it's in the shower
s: but most nights it does not begin with a shower
h: yeah s: I shower like once a month, twice a month
h: nope
[intro song] Hello hello, welcome to the show, welcome to the show
welcome to the show, it's time to talk about our life [Chloe bark]
[music]
s: I kept my boxers on h: yeah
s: sorry everyone h: [laughs]
s: this is not our bathroom, one of the reasons that we moved
s: was because we wanted a bigger better bathroom
h: that you could fit in s: that I could fit in
s: this is not that one, the dream bathroom still has a little bit of work
s: that has to be done, so we'll show you that another time
s: I think the echo in here is really annoying, sorry about that
h: maybe talk a little quieter
s: now, we're going to show you every excruciating detail of my night time shower
h: nope, I think we've showed you showering enough times, Shane
h: that they don't need to see it again s: give the people what they want!
h: it's not this, before we go, though
h: if you haven't watched one of our countless shower routines
h: this is Shane's bath seat that he uses to lay on while he showers
s: keeps me raised up so Hannah doesn't have to bend over into the tub
h: yep, and then we put in this removable extra long hosed shower head
h: for while we're gonna be using this bathroom
h: so that it can reach everywhere in the tub, very useful
s: we also took the doors off the shower
h: yeah, this used to have sliding doors and now they're gone
h: because it's just easier when there's nothing in the way
s: we didn't know how to take them off so Hannah just opened them
s: and broke the glass and then we cleaned it all up
h: [laughs] nope
h: we just wanted to share a quick update on one of our latest projects
s: we've teamed up with Genentech, to create some exciting content
s: for the SMA my way program, and our latest instalment is now live
h: about 4 years ago Shane and I took a trip to New York City
h: and it was one of our first big adventures together
s: and naturally it was a huge disaster
h: yeah, nothing went the way that we expected it to
h: but it turned out to be one of our favorite memories
s: we just posted a video about the experience over on smamyway.com
h: we talk about how we support each other through frustrating challenges
h: like this absolute debacle
s: check it out at the link in the description below
s: it's difficult to wash my face in the shower
s: cause the water goes up my nose and my ears and my eyes and my mouth
s: so I almost die h: [laughs]
s: so we do my face with a wash cloth at the end
s: normally we do it at the beginning h: but we forgot
s: but we forgot, so we're gonna do that now
[music]
h: I accidentally picked the same color shirt and sweatpants
h: so Shane's wearing a groutfit
s: this is a caregiver mistake 101 h: no
s: it was a rookie caregiver mistake h: a what?
s: a rookie caregiver mistake h: a rookie? [laughs]
h: it's kinda stylish s: it's okay
s: I feel like at night time we're relaxing, it doesn't matter what we wear
h: yeah
[music]
h: done? s: how do I look?
h: perfect s: now lotion
h: alright, now you've embraced lotion, look at you
s: yeah, I moisturize
[music]
h: we're watching TV, want to tell them what's on your neck?
s: so when I sit in my chair for our movie or TV show nights
s: I like to wear this neck brace h: uh huh
s: cause my head gets tired at the end of the day and it's hard to hold it up
s: so this stabilizes my neck, it feels super comfy
h: someone sent that to us s: yeah
h: it was nice of them s: I could fall asleep right here
s: and often, sadly, while our show or our movie is on
h: I look over [laughs] s: I begin to doze off cause I feel so comfy
h: your eyes'll be closed, if I say it you always get annoyed too
h: you're like, I'm listening s: I'm watching, I am awake
h: [laughs] I'm like no you're not s: the truth is that I am so comfy
s: I could fall... h: okay
[music]
s: and then we sleep here h: the end
[music]
s: okay, we're very tired h: uh huh
s: part of the problem of filming a night routine
s: is that if you do it for real h: at night
s: it's now midnight h: I know
s: we're exhausted, so normally we watch our TV show or movie
s: until we are like asleep h: yeah, which is how we feel right now
s: which is what we're doing right now
h: and now we're like, well, guess we should film the rest of it
s: yeah, so everyone this is authenticity h: yeah, we're not filming this ahead of time
h: it's late, we're tired
s: okay, so the last 2 things that we do that are notewoworthy
s: are Hannah lets the dogs out, the dogs plural
h: we've got Chloe over there, and Bella on her tiny little floor bed that she loves
s: aw, now that we live with Bella and Chloe
h: yeah they both go out and they get their treat, Chloe goes in her crate
h: and Bella sleeps loose in the house and then I get Shane his shake
s: shake, that's the other big part
h: yep, then we brush our teeth and get into bed
s: yep, but my...I'll tell you
h: hi baby, you ready for bed? you ready to go potty? I know, time to get up
h: come on Chlo, let's go potty, I know it's hard, let's go potty
h: and you'll get your treat, okay? ready? come on [laughs]
h: oh yeah I know, you're gonna come on, lets go potty
h: now we're happy, let's go, hi Bella! you ready to go potty?
[music]
h: here comes Bella and Chloe [laughs] good girls
[music]
h: so while Chloe has her nightly cuddle with her nana, I will get Shane's shake
h: and then when he's done and we go into our room
h: Chloe follows us in so she can go in her crate
[music]
s; alright, so this here is a 600 calorie milkshake
h: uh huh
s: if you've ever heard that you shouldn't go to bed on a full stomach
h: you don't take that advice
s: I'm here to tell that at least for me that's not how I do it
h: nope s: this fills me with the calories
s: to have sweet sweet dreams h: okay
s: and begin my night's sleep h: nice
s: this is how I avoid my feeding tube
h: yep, okay s: do mine every night
h: drink up s: and I try to---
h: ooh, okay [laughs]
s: I'm just saying, you might think I sip it, it's a big shake
s: nope, I just power through
h: you know what, actions speak louder than words so let's just...
s: [laughs] here we go
[music]
s: okay, now that we're filming this I'm realizing how gross this is
h: yeah s: because that was not enough liquid
h: some water s: I'm gonna drink some water
h: heading to bed now
s: well, that's the end of our night routine
h; yep, we're in bed, this is it s: this is the grand finale
s: and we don't have fireworks for you
h: we're just gonna leave the camera rolling over there, until we fall alseep
h: for 45 minutes s: we want to capture Hannah's night screams
h: good one Shane s: okay, goodnight
h: goodnight
s; I love you h: are you saying that to them or me?
s: you! h: I love you grubs
[music]