Our Baby Made of Glass | Living Differently

Our Baby Made of Glass | Living Differently


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.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.Wow!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 compressedback 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?Yeah!‘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!Whee!Yay!‘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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