我期待的复诊天终于来了，我好想知道女儿最新的情况。继上次听到所有的好消息之后，我期待更多的好消息。不过这几天，我也发现到女儿好像又黄了点，心也有点不安。其他人更是一眼就看说我女儿很黄，我的心情更是低落得很了。
早上9点，女儿抽血去验的时候，也是没哭，只是不安的红了眼。今天的时间过得很快，什么都还没做到似的，又到了1点。今天复诊的人也不是特别多，也大概等了1个小时就到我们了，今天见新的女医生。女儿的验血报告并不美，黄疸升到了130，肝功能指数表也比上次高。医生提起了我女儿之前的liver biopsy结果，说报告显示她已经有肝硬化的迹象了，而且程度不是轻微，是5/10偏向严重那边。今天的医生要我们有心理准备，女儿看起来是“需要”进行transplant 的。至于几时需要这个手术，医生说我们还有时间的，不会是在她1岁前就需要面对。
今天的复诊很沉重，女儿的体重问题也是现下他们很注重的一个问题，她可能需要到special formula。她无法分解“油”所以她身体无法吸收来增重。
今天在等待复诊的时候，我遇到了一个2个多月怀疑是跟我女儿同样的病的孩子，我给她们留了电话，希望日后可以帮到他们些什么。这条路我走了2个多月，那种无助感我明白，我也是靠别人的鼓励帮忙才撑到了现在。现在换我帮别人了，真心的希望那孩子并不是我女儿的这种，希望OTC能帮到那孩子，希望他只是小阻塞。我也遇到了post kasai 8个月的另一位BA孩子，跟他妈妈请教了些问题，我才不至于糊糊涂涂的以为女儿的黄疸又增加了是件很危险的事情。她跟我说，她孩子的黄疸和肝功能数值一直都是上上下下的。
我也遇到了一位之前给过我鼓励和指导的朋友，她为女儿进行祈祷，我很感激。
Gastro follow up- 2nd time
Look forward to our second gastro follow up because we gained some confidence after hearing positive review in the first. However, these few days, we noticed her skin has become more yellowish again, it worries me. Others commented about her jaundice too when they looked at her.
At 9am, we brought her for blood test. There weren't many people today, so it was our turn after waiting for about 1 hour. Her blood test result didn't turn out well, her jaundice level risen to 130. The doctor also looked at my daughter's liver biopsy results. It shows that there are signs of hardened liver, and it's more towards the severe side. We were told to prepare for the worst, she may need a liver transplant, but it would not happen before she turns 1 yr old.
Her weight is also a problem because she's not gaining weight. She may need to drink special formula milk, because her body is not able to digest and absorb fats.
We met a family with a 2-month-old who has similar symptoms as my daughter, so we exchanged phone numbers because we hope we can extend help to them should they need it. Having been through this, I can sympathize with people in similar plight. I've also met a mother whose 8-month-old baby is a post kasai too.
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