Int US 1480 Folder Collection
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Zoe has broken countless bones.
We stopped counting at around 100.
-Does it hurt when you break a bone? -Yeah.
When Zoe was a really little baby, she would break from the wind.
She mostly breaks longer bones. A lot of arms and a lot of legs.
The long bones, the ribs.
A couple of collar bones, which are very painful.
The specialist recommended that we could just terminate
the pregnancy and then donate the foetus to science.
Grab on to the couch, Zoe.
Use your muscles, too.
Nice job!
Hey, you did it!
Zoe's condition is osteogenesis imperfecta, which means
brittle bones, and it has nothing to do with calcium deficiency,
which is the most common suggestion I hear from strangers.
"Have you tried giving her calcium supplements?"
"You want to give her some milk?"
You think, "She's going to be seven years old. I haven't tried that?"
This shade of pink.
We were told it was a 1 in 50,000 chance for it to happen to her.
She has a mutation in her DNA which causes it.
We were told that it was nothing that either of us did
'or have ever done.'
And what's that one?
'It was a very typical pregnancy. I could feel her moving.'
Everything went by the book, basically,
up until the 19-week anatomy scan.
We were doing a 4D ultrasound and they were able to see her
multiple fractures that were fresh and healing already.
She had broken ribs.
Her arms and her legs were about six weeks behind
what they should have been.
So they told us that she had a really severe condition and
that she possibly wouldn't make it until her birthday.
I'm going to give him some toys to play with.
The specialist recommended or suggested that we could just
terminate the pregnancy, but it was more than that to us.
It was our first child together.
We actually did contemplate the abortion that she was telling us
that was the only thing that was humane.
And then we were in a panicked state.
There are a couple of different types of OI,
with different severities, and Zoe was misdiagnosed with Type II,
the most severe, and ended up...Her genetic results told us that
she had Type III OI, which is still very severe.
When's your birthday? October 24th.
We went in prepared that Zoe could possibly not come home with us
from the hospital, and so hearing her cry for the first time
and having such good Apgar scores and not needing oxygen
was just the biggest blessing that I could have ever asked for.
Can you move this one, please? Thank you.
When we were changing Zoe's diaper, in the beginning
it took three of us - one person to lift up her pelvis,
one person to slide the diaper in and out, and then another person
to hold her arms because babies have a startle reflex,
and I was on arms duty.
I gave her just a little bit of room.
It was a quarter-inch to half an inch
and she startled into my hand and it sounded like a broken chicken bone.
Her radius and ulna just snapped.
And lay down.
Only a few. Not too many more.
'Zoe has been in her neck brace'
from the time she was diagnosed with her cervical kyphosis at
about two and a half years old and is still currently in it.
A really interesting series of X-rays and scans for Zoe.
Here in the first picture was one of the first scans that we got for her.
You can really see that the spinal cord
is completely compressed
back there.
Leggies down as flat as you...I got you, honey.
'Now that she's six years old, it's getting quite a bit easier,'
with her being able to tell us, "I just broke."
Or, "No, you didn't break me." Or, "Hold on. Please, don't move me."
Oh, you're using your elbow. Good job.
It's so much easier. Yeah. I mean, it's day and night.
Nice job! I did it!
That was a really great job. Mm-hm.
'Today, we came to Ingle Park to have fun at
'the wheelchair-accessible playground.'
Are you excited?
'It's one of the only ones in Orange County that Zoe's able
'to play on,'
because the ground is made out of foam instead of woodchips or sand.
She, especially this playground,
she is able to do everything that the other kids are,
other than run on their feet.
So she can race them just as fast in her wheelchair.
Three, two, one!
'Sometimes, I worry about her getting hurt, if other kids
'don't know the extent of her condition.'
Zoe has a big enough voice, where she will tell someone,
"Please, don't touch my wheelchair, please don't push my wheelchair,"
and that's very helpful.
We have prescription valium, prescription hydrocodone,
just in case she does fracture, and all of the splinting supplies
to do it ourselves. We've had that since she was an infant.
We carry it with us in our bag everywhere we go.
Guess what sound we're going to work on. What?
S sound!
'She has some little bit of like some structural issues
'with her mouth. She's working to increase her clarity'
in her speech, and also some of her language and things like that,
so that way she has more clarity when she's speaking and
talking to her friends and family.
Is she going to do speech with us today? Yeah. OK, show me your S.
S. Ooh! You remembered it right away. I like it.
Zoe's amazing. She's so fun and she makes everything positive.
I see the...soup.
OI does not give you a shortened life expectancy.
There's no cure for osteogenesis imperfecta.
For now, I'm very grateful that there's at least treatments,
because even 20 years ago there wasn't as many.
I would not change Zoe.
If I could take her away, back, I would never ever take it back.
In the future I hope that Zoe has just as well of an opportunity
as everybody else.
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Our Baby Made of Glass | Living Differently

1480 Folder Collection
April Lu published on October 24, 2018    Debra Liu translated    Evangeline reviewed
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