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  • Zoe has broken countless bones.

    佐伊有很多骨頭都斷裂了

  • 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!

  • 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

Zoe has broken countless bones.

佐伊有很多骨頭都斷裂了

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【非凡人生】玻璃寶寶 Zoe (Our Baby Made of Glass | Living Differently)

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    April Lu 發佈於 2018 年 10 月 23 日
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