We stopped counting at around 100.

我們數到差不多 100 個地方就停止了

-Does it hurt when you break a bone? -Yeah.

-你骨頭斷裂的時候會痛嗎？ -會呀

When Zoe was a really little baby, she would break from the wind.

當佐伊還很小的時候，她甚至被風吹到骨頭就斷裂了

She mostly breaks longer bones. A lot of arms and a lot of legs.

她通常是比較長的骨頭斷裂。大多是在手臂和腿

The long bones, the ribs.

肋骨也是屬於長骨

A couple of collar bones, which are very painful.

鎖骨斷了是很痛的

The specialist recommended that we could just terminate

專家建議我們應該要終止妊娠

the pregnancy and then donate the foetus to science.

然後將胎兒捐獻給科學研究

Grab on to the couch, Zoe.

抓住沙發，佐伊

Use your muscles, too.

也利用妳的肌肉

Nice job!

很棒

Hey, you did it!

嘿，妳成功了

Zoe's condition is osteogenesis imperfecta, which means

佐伊的病症是成骨不全，意思是

brittle bones, and it has nothing to do with calcium deficiency,

骨頭很脆弱，跟缺鈣無關

which is the most common suggestion I hear from strangers.

別人常常建議我們：

"Have you tried giving her calcium supplements?"

「你們有試過幫她補充鈣質嗎？」

"You want to give her some milk?"

「你們有多讓她喝牛奶嗎？」

You think, "She's going to be seven years old. I haven't tried that?"

你們難道覺得：「她已經快 7 歲了，我們沒試過這些方法嗎？」

This shade of pink.

這是粉紅色的影子

We were told it was a 1 in 50,000 chance for it to happen to her.

我們被告知，這種事發生在她身上的機率是五萬分之一

She has a mutation in her DNA which causes it.

她的基因中有一個突變造成這種狀況

We were told that it was nothing that either of us did

我們被告知，這不是因為我們做了什麼

'or have ever done.'

或沒做什麼

And what's that one?

而那是什麼？

'It was a very typical pregnancy. I could feel her moving.'

這不過是很典型的懷孕過程，我感覺到她的存在

Everything went by the book, basically,

基本上，剛開始的產前檢查掃描

up until the 19-week anatomy scan.

都還算正常，一直到第 19 週

We were doing a 4D ultrasound and they were able to see her

我們做了 4D 超音波檢查，醫生看到她有多處骨折

multiple fractures that were fresh and healing already.

而這些骨折的地方已經癒合並恢復健康

She had broken ribs.

她的肋骨斷了

Her arms and her legs were about six weeks behind

她的手臂和腿的成長慢了 6週

what they should have been.

這應該是什麼樣的情形呢？

So they told us that she had a really severe condition and

因此，醫生說她的病情很嚴重

that she possibly wouldn't make it until her birthday.

她可能無法撐到出生

I'm going to give him some toys to play with.

我要給他一些玩具

The specialist recommended or suggested that we could just

專家建議我們應該

terminate the pregnancy, but it was more than that to us.

終止妊娠，但是這對我們的意義非凡

It was our first child together.

這是我們一起擁有的第一個孩子

We actually did contemplate the abortion that she was telling us

我們確實考慮過墮胎

that was the only thing that was humane.

這是唯一一個人性化的考量

And then we were in a panicked state.

然後我們處於恐慌狀態

There are a couple of different types of OI,

成骨不全症 ( OI ) 根據其嚴重狀況

with different severities, and Zoe was misdiagnosed with Type II,

有幾種不同的類型，佐伊被誤診為第二型

the most severe, and ended up...Her genetic results told us that

更嚴重的，最終…她的基因診斷結果告訴我們

she had Type III OI, which is still very severe.

她患的是第三型成骨不全症，也是非常嚴重的一種

When's your birthday? October 24th.

妳的生日是什麼時候呢？ 10 月 24 日

Wow!

哇

We went in prepared that Zoe could possibly not come home with us

我們已做好準備佐伊可能不會從醫院和我們一起回家

from the hospital, and so hearing her cry for the first time

因此，第一次聽到她的哭聲

and having such good Apgar scores and not needing oxygen

看到她有如此高的阿普伽新生兒評分 ( Apgar Score )，而且不需要氧氣

was just the biggest blessing that I could have ever asked for.

這是我所祈求過的最大祝福了

Can you move this one, please? Thank you.

妳可以移動一下這一隻腳嗎？謝謝

When we were changing Zoe's diaper, in the beginning

當我們在幫佐伊換尿布的時候，剛開始

it took three of us - one person to lift up her pelvis,

需要三個人一起 - 一個人抬她的骨盆

one person to slide the diaper in and out, and then another person

一個人把她的尿布拿出來，放新的進去，然後第三個人

to hold her arms because babies have a startle reflex,

扶著她的手，因為嬰兒會有驚恐反射動作

and I was on arms duty.

我是負責扶她的手

I gave her just a little bit of room.

我給她一點點的空間

It was a quarter-inch to half an inch

差不多 0.25 到 0.5 英吋的空間

and she startled into my hand and it sounded like a broken chicken bone.

她驚恐的反射動作碰到了我的手，聽起來就像雞骨斷裂的聲音

Her radius and ulna just snapped.

她的橈骨和尺骨就這樣斷了

And lay down.

然後躺下來

Only a few. Not too many more.

走幾步就好，不要太多

'Zoe has been in her neck brace'

佐伊一直用著頸托

from the time she was diagnosed with her cervical kyphosis at

自從她 2 歲半被診斷出有頸椎後突開始

about two and a half years old and is still currently in it.

到現在一直有使用頸托

A really interesting series of X-rays and scans for Zoe.

佐伊的 X 光和掃描系列很有趣

Here in the first picture was one of the first scans that we got for her.

第一張圖是我們為她掃描的第一張

You can really see that the spinal cord

可以看到脊椎

is completely compressed

完全地被壓縮

back there.

到後面

Leggies down as flat as you...I got you, honey.

腳慢慢地放下來，放平…我扶著妳了，親愛的

'Now that she's six years old, it's getting quite a bit easier,'

她現在 6 歲了，生活開始漸入佳境

with her being able to tell us, "I just broke."

她也會告訴我們：「我剛剛骨頭斷了。」

Or, "No, you didn't break me." Or, "Hold on. Please, don't move me."

或是「沒有，你沒弄斷我的骨頭。」或「慢一點，請不要移動我。」

Oh, you're using your elbow. Good job.

喔，妳剛剛用了妳的手肘，真棒

It's so much easier. Yeah. I mean, it's day and night.

越來越輕鬆了，沒錯，我的意思是，這是日夜不分的挑戰

Nice job! I did it!

真棒，我做到了

That was a really great job. Mm-hm.

妳真的很棒喔，嗯嗯

'Today, we came to Ingle Park to have fun at

今天，我們來英格爾公園玩

'the wheelchair-accessible playground.'

“適合輪椅使用者的遊樂場”

Are you excited?

妳開心嗎？

Yeah!

開心

'It's one of the only ones in Orange County that Zoe's able

這裡是橘郡唯一一個佐伊可以遊玩

'to play on,'

的地方

because the ground is made out of foam instead of woodchips or sand.

因為地面是用泡沫而不是木屑或沙子製成的

She, especially this playground,

她，特別是在這個遊樂場裡

she is able to do everything that the other kids are,

她能做任何其他小孩能做的事

other than run on their feet.

而不是用她的腳跑步

So she can race them just as fast in her wheelchair.

她可以用她的輪椅和其他孩子們比賽

Three, two, one!

一、二、三

Whee!

衝呀

Yay!

好棒呀

'Sometimes, I worry about her getting hurt, if other kids

有時候，我擔心她會受傷，如果其他孩子

'don't know the extent of her condition.'

不知道她病情的程度

Zoe has a big enough voice, where she will tell someone,

佐伊的聲音夠大聲，她會告訴別人

"Please, don't touch my wheelchair, please don't push my wheelchair,"

「請不要碰我的輪椅，請不要碰我的輪椅」

and that's very helpful.

這非常有用

We have prescription valium, prescription hydrocodone,

「我們有處方安定，處方氫可酮」

just in case she does fracture, and all of the splinting supplies

以防萬一她骨折，而且所有的夾板都是我們自己做的

to do it ourselves. We've had that since she was an infant.

從她還是個嬰兒我們就準備了

We carry it with us in our bag everywhere we go.

我們把夾板隨身攜帶在袋子裡，到哪裡都帶著

Guess what sound we're going to work on. What?

猜猜看我們接下來要發什麼音呢？什麼？

S sound!

S 音

'She has some little bit of like some structural issues

她有一點像是嘴巴裡有些結構性的問題

'with her mouth. She's working to increase her clarity'

她試著改善自己演說時的清晰度

in her speech, and also some of her language and things like that,

同時也改善語言上一些類似的問題

so that way she has more clarity when she's speaking and

這樣她和朋友或家人說話的時候

talking to her friends and family.

就會比較沒有問題

Is she going to do speech with us today? Yeah. OK, show me your S.

她今天要加入我們一起演說嗎？要。好的，讓我聽聽妳的 S

S. Ooh! You remembered it right away. I like it.

S。喔，妳馬上就記得了，我喜歡

Zoe's amazing. She's so fun and she makes everything positive.

佐伊很棒，她很有趣，而且她看待每件事都很樂觀

I see the...soup.

我看到的是…湯

OI does not give you a shortened life expectancy.

成骨不全症不會讓妳的壽命比較短

There's no cure for osteogenesis imperfecta.

成骨不全症無法治癒

For now, I'm very grateful that there's at least treatments,

現在，我非常感恩，至少有可以治療的方法

because even 20 years ago there wasn't as many.

因為即使在 20 年前，也沒有那麼多治療的方法

I would not change Zoe.

我不會改變佐伊

If I could take her away, back, I would never ever take it back.

如果我可以把她帶走，不要她，我永遠不會這樣做

In the future I hope that Zoe has just as well of an opportunity

我希望未來佐伊也能夠有個機會

as everybody else.

像其他人一樣