[Shane] It's the night before Spinraza and all through the house,
Shane is not stirring because
he has SMA and can't move.
[Hannah] Nope, note to self: Don't put in vlog.
[Music]
[Shane] It's like my fifteenth cup of water in the last
three hours.
I'm supposed to hydrate
Before Spinraza-
[Hannah] For like the week leading up to it.
[Shane] Yeah, But I never remember until like 8 p.m. the night before.
So, I've been chugging water; I'm so full of water.
I'm gonna lay on the table to get my
injection and just spew vomit - water vomit - out my mouth.
[Hannah] All right...
[wet barf noise]
[Hannah] I think Shane might be a little bit nervous for his injection and it's uh
coming out in the form of
[Shane] Humor
[Hannah] very immature and bad humor.
So, please forgive him for the terrible and disgusting jokes.
[Shane] Can you get a shot of my hand sweat right now? [Hannah] No. [Shane] I am nervous!
[Hannah] No one wants to see your hand sweat.
[Shane] I know that like the first 7 injections have been fine,
I know that it doesn't really hurt that badly. But I just don't want a needle...
digging around in my neck.
That does not make me-
[Hannah] That's fine!
[Shane] That does not make me want to like calmly drift off to sleep tonight. So anyway, I'm all
I'm full of water. I'm violently nau-
[Hannah] Violently nervous.
[Hannah] Full of water. Violently nervous. Don't want to go.
[Shane] I am full to the brim with water. I am...
extremely anxious, and I'm not tired, and we have to get up at -
6am, to go to the Hospital.
[Hannah] I really don't want to get up at 6:00 a.m
[Shane] We're gonna try and take the camera into the injection room.
[Hannah] I don't know if there's a problem with that they might have some sort of like hospital rule -
no video recording in the operation room.
[Shane] If I asked nicely and give them the puppy dog eyes. [Hannah] Yeah, yeah
They said no to lots of things before.
We've tried to film before.
[Shane] Yeah.
[Hannah] We'll see.
[Hannah] Try again.
Shane you didn't finish your last cup
14 and a half, not 15. Doesn't count.
[Shane] Nooo.
[Music]
[Shane] I'm focusing all of my energy on not throwing up all the water in me.
What is the point of the water?
Oh, for the blood test.
[Hannah] Yeah, no yeah, it like plumps your veins up.
[Shane] Right, cause I'm hard to get blood out of. So they say to hydrate. That's a stupid reason.
[Hannah] No.
[Shane] Blood comes out either way.
[Hannah] Well, no, you found that it doesn't.
[Shane] It-it eventually does, just takes a thousand sticks.
[Hannah] That's the worst part of the day though.
[Shane] I forgot I have to get a blood test...
[Hannah] Awww
[Shane] I think I'm not gonna go.
[Hannah] You are gonna go.
[Shane] No. I think I don't need Spinraza.
I'm-I'm comfortable with my disability.
Goodnight.
Definitely missed that shot.
[Hannah laughs]
[Shane] It's 6am.
[Hannah] Awww
[Hannah] Did you sleep well?
[Shane] Yeah I did. I haven't gotten up this early in a long time.
[Hannah] Me either.
[Shane] I used to get up this early every single day.
I've lost my - my mojo.
[Music]
Everything that could've went wrong on the way here went wrong, so we're about a half hour late. We have to go.
[Hannah] Shane's running. We have to run now to get Shane's blood work.
But we will tell you later what went wrong on our drive here.
We're all checked in.
Nothing was in the system, as always.
I don't know why they have a system. If they-
[Hannah] I think you could come any day.
[Shane] I could just come whenever I felt like it.
And convince them that I am here for Spinraza.
And it would eventually happen.
[Hannah] Get it every two months.
[Shane] Yeah
[Hannah] We're waiting for blood now.
[Shane] Blood work
Not blood.
Got my blood.
Got my urine.
Over there.
We're all set.
[Hannah] We're here in the right waiting room.
[Shane] Yeah, we're only 15 minutes late, I don't know how that happened.
[Hannah] Yup.
[Shane] But look at this view.
[Hannah] Awww ... there's our capital.
[Nurse] I definitely think this procedure is really cool
because I think the medicine is awesome.
[Nurse] Alright, I'm going to park you here real quick!
[Shane] Yep!
[Hannah] Are you excited?
[Shane] Am I excited? Hmm, that's not the word I would use.
[Hannah] Anxious to be done?
[Shane] Ready. I'm ready.
[Hannah] You're ready.
[Shane] Does this angle highlight my hair because my hair looks really good today.
My injection is done. It was probably the hardest one yet.
The doctor states that I've built up some scar tissue
in that area where they do the injection
every time because he had to like
really work to get the needle in the right spot on my spine and that felt really weird
as he's, like, shoving it around and
Maneuvering inside of me
Umm ...
That at one point they were like, "Ok, we're not getting it, we can't get it."
so... that was a little... concerning [laughs]
but they got it eventually and the actual injection was fine
So...
[Together] Thumbs up!
Coffee.
Aww! Yeah you have to baby me
[Hannah] Yeah, he's upset
[Shane] I just had a really bad injection
And I'm gonna milk it for all it's worth
[Bandaid being ripped off, complaining noises]
Ow... is it off?
[Hannah] I had to get a grip first, I had to do it in stages... your hair's all over it
[Shane] -hissing-
[Hannah] Awwh okay ... yeah good job
[Shane] Ouch...ouch
[Hannah] Was that worse than the injection itself?
[Shane] It's now the day after my spinraza injection
After the procedure I got kind of a headache and I was like sore and just really tired from the
roughness of the whole thing
but I slept well
and I feel a lot better today, just a little bit of soreness
[Hannah] We've realized that we never explained the fiasco of getting to the hospital
So yesterday we left at 7 a.m. We got up at 6 a.m. and we
had to leave by 7 a.m. It was like a very quick timeline
[Shane] We were right on time too.
[Hannah] Yeah.
[Shane] We got out the door at the exact
minute that I wanted to that would put us at the hospital
right at the right time.
[Hannah] Shane didn't plan for anything to go wrong because it was so early
like I would have nixed that.
[Shane] There is a limit to my need to be early,
I was getting us there on time.
[Hannah] So we get out to the van and I
pull the handle to open the door that lets Shane's ramp out - the side door - and it won't open
It's like clicking and trying. It's an automatic door and I'm like
okay...
[Shane] So it sounds like it's about to explode
[Hannah] Yeah
so I start heaving at it, like trying to make it a manual door and it doesn't like that.
It likes to be automatic.
[Shane] The ground beneath everywhere out there
in our parking lot is pure ice.
[Hannah] It's an ice skating rink.
[Shane] Completely ice.
[Hannah] Yeah.
[Shane] So Hannah's...you can't really-
I'm pulling but
I'm going with my... I cannot stand still.
[Shane] Your feet were sliding.
[Hannah] So Shane is right next to me so I can hold on, it's absurd
[Shane] And we realized realize that the door is frozen shut so Hannah
opens the front door, climbs up to look at it at the top where it was frozen, and there was just a
Dam of ice like all along the seam of the top of the door.
[Hannah] Yeah, so I had-
[Shane] Thick ice, it's not like
a little that you can just like chip off.
[Hannah] Yeah, this was, it was frozen shut
And I'm like so should you email them and say we can't go? Like what should we do?
[Shane] Well I was like: we'll just yank on the door for a while. So it's about 4 degrees outside-
[Hannah] Yeah, it was under 10 degrees
[Shane] And Hannah's just yanking on the door, nothing's happening.
She runs inside to get gloves
[Hannah] It was so painful.
[Shane] So that adds 5 minutes...
[Hannah] Then I'm standing on the side of the car trying to see above the door with our like ice
scraper for the windshield and I'm just like hammering at this ice
[Shane]Picking at it
[Hannah]Yeah it took forever and then finally I got like the last little chunk off, I guess.
This was like
15-20 minutes into this
[Shane] It was a very cold ordeal. I had my jacket on but I was
shivering by the end of it.
[Hannah] So, then we finally got it to go. We drove, it was fine and we get to the
parking deck at the hospital and
There's a line of cars.
We've never seen that before.
This man gets out of his car and runs inside. So now we're trapped behind this guy and I'm like:
excuse me you can't leave your car, sir. Come back!
[Shane] It looked like the zombie movie thing where someone gets out of their car and dashes away
You know?
[Hannah] Yeah.
So...
[Shane] Do you know that trope that I'm referring to?
[Hannah] Finally he comes back because the
thing that lets people in was broken. He was going to get help.
Someone came, he comes back to his car.
The guy that works there just like opens it up and it's just like a free-for-all to
go in so we didn't have to pay which was nice.
[Shane] So that added fifteen more minutes.
[Hannah] Yeah, but it was broken so we sat there for about 10 minutes so we were pretty late.
[Shane] We were late.
[Hannah] But it all worked out it.
[Shane] It did work out.
[Hannah] Yeah. [Shane] It ended up not being a big deal like I got my injection almost right on time.
[Hannah] It was almost early.
[Shane] So...
[Hannah] So...
[Shane] But now it's all over and I don't have to do it for four more months.
[Hannah] Yeah.
[Shane] Yayyy!
[Music]