MERRY CHRISTMAS and HAPPY NEW YEAR 2011 !!!

It’s the time to greet all my family members, relatives, friends, colleagues and others who we never met before but they have gave us a big support during The Lokes’s toughest days.

MERRY CHRISTMAS and HAPPY NEW YEAR 2011!!!

Kai Xin is growing up as a normal kid, eat-play-sleep. Nowadays, she has another role in our family “housekeeping commander”, she always ask us to clean up the dishes after eat; require everything has to be tidy up like clothes, toys la and etc; sometimes she will use her face towel to start cleaning the floor, sofa, and her toys.

You all try to guess what is her favorite cartoon lately? Last time is Pink Panther, then Mickey Mouse … now is Elmo’s World by Sesame Street. She will not miss out every Sat and Sun 8.00am show on Astro Channel 613. Although it has been repeat few times on the channel, but she still love it very much. We have bought Elmo’s bottle, book, sticker and lanyard, but not the Elmo’s doll lo (because it’s too expensive).

In last two month, we have travelled to NUH often due to Kai Xin’s liver enzymes were abnormal. After several checkups and doctor has prescribed a steroid for her to take, finally her liver enzymes back to normal level. We have to say big thank you to the Prof. in NUH because of his experience, decision and immediate action that he has taken to treat Kai Xin.

Last and not least, we would like to share the latest photo that we taken from Kai Xin with all of you.

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Kai Xin is TWO!

Once a year there is a very special day, 22 Oct is the Kai Xin's precious day...

Time fly very fast, Kai Xin is TWO!

She has received many many gifts, presents and great wishes from families, relatives and friends...

We have organized a small and warm birthday celebration party cum families gathering on last Sunday (Her actual birthday is on 22 Oct 2010).

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Kai Xin Transplanted 1 Year (YEAH...)

It has been few months The Lokes didn’t update the blog, because daddy and mummy are very busy working in day time and taking care Kai Xin in the night time.

Flash back to the month of July, Kai Xin was admitted NUH to undergo PTC (Percutaneous Transhepatic Cholangiogram) procedure for stent removal. The reason to carry out the procedure is Kai Xin was developed few episode of fever on and off in past few months. Therefore, the surgical team suspected the stent was placed between common bile duct and intestine which caused the fever (a foreign body in human body for certain of period may cause viral or bacterial infection). Furthermore, this stent position is also very sensitive and critical because it’s at the connection for bile flow.

On PTC day, Prof, radiologist and doctors were prepared for the procedure in the early morning. We were accompanied Kai Xin till the procedure room. Wao, the room is extremely cool. At that time, Kai Xin was quite sleepy because doctor has given her sedation with oral medicine. The procedure started 8.30 in the morning. Fortunately, after an hour time the surgeon told us that the stent position is not in critical position and it was move into intestine route. The stent will not come out because it has moved to the intestine deadlock position. Most importantly, it wouldn’t implicate the liver normal function for future times. Again, it makes us happy and feel released after we heard that.

Other than this, Kai Xin is having a good development like crawling, standing with support, but she still feel lazy to walk and very nervous in any actions. On her medicine wise, she is now only consuming one anti-rejection medicine (Tacrolimus) with low dosage compare to early time.

Thank you again for all the family members, relatives, colleagues and friends who give prays and support to her all the times.

Time fly, she already underwent transplant for more than 1 year lol (Hoooray)…..

(This update suppose to be posted on 19 Jul 2010, because daddy and mummy are too busy)

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Kai Xin's Latest in Sin Chew Jit Poh's Metro Edition

我的肝，是媽媽的肝‧小凱欣有愛更堅強

她天真無邪的笑容，彷彿告訴全世界的人，活著就是希望，堅強面對才是重生最關鍵的條件。

她雖然只有15個月大，可是僅有8公斤，小小的身軀卻蘊藏一股巨大的力量，堅強的意志力讓她繼續活下去，她就是去年透過《大都會》登報籌募醫藥費的羅凱欣。

小凱欣在出世110天就被證實患上天性膽管阻塞（biliary atresia），並通過星洲日報基金籌募50萬令吉的醫藥費到新加坡進行肝臟移植手術。

她在去年6月在新加坡進行的肝臟移植手術非常成功，而捐肝者就是其母親李彗菁。

如今她的腹部積水已消失，皮膚不再呈黃色，與其他嬰兒無異，不但可食用粥和魚肉，還會自行翻身和學習站立。

情況樂觀笑容燦爛

雖然手術後仍在觀察中，可是小凱欣手術後的進展比預期中理想，惟基於長期服用抗排斥藥物，促使小凱欣的免疫系統和體抗力比較弱。

縱使已出院回家，不過仍不可到人多的地方與群眾接觸，只能在家裡，或戴口罩到醫院接受檢查。

父親羅禮彬指出，小凱欣在去年肝臟移植手術後，12月杪出現發燒的症狀，在馬大醫院進行電腦斷層掃描和血液檢驗，發現有出現輕微排斥現象後再度到新加坡醫院接受治療。

小凱欣的病情良好，情況也相當樂觀，看見記者時回以燦爛的笑容，彷彿告訴要大家說：“謝謝大家，我很好！”

母親篇

我要用一輩子時間陪她

“凱欣是我的孩子，既然將她帶來這個世界，我們就該保護她，盡自己所能去延續孩子的生命。”
李彗菁慶幸自己可以移植肝臟給孩子，許孩子另一個重生的機會。

雖然面對肝臟移植手術的風險，但能夠捐肝給孩子，不必再等待其他肝臟來挽救孩子的性命，對李彗菁來說，已是一種恩賜。

當初化驗顯示其肝臟適合凱欣，她毫不猶豫的作出捐肝的決定。

小凱欣自小受病折磨，無形中產生一種堅毅的鬥志，其父母同樣以堅強的信念，時刻做好應對的準備，給她無微不至的照顧。一旦發現小凱欣的體溫超過38.5度時，就必須即刻送往醫院就醫。

“雖然要工作又要照顧孩子，可是這種生活卻磨練我們快速成長，如今看見孩子健康的成長，我們知道這一切都是值得的。”

由於小凱欣暫時無法與外界接觸，她只能透過網路讓家人與朋友看見小凱欣的進展，而其丈夫羅禮彬也不定時更新為女兒設立的部落格，以便讓關心小凱欣進展的公眾能知道最新的狀況。

目前小凱欣須長期服食藥物控制病情，惟李彗菁與羅禮彬卻抱著樂觀的態度，深信醫學界進步神速，小凱欣或是在不久的將來便無須再依賴藥物也能健康成長。

“既然決定讓她重生，我們就要用一輩子的時間來陪伴她，確保她的生命繼續燃燒。”

父親篇

面對母女生離死別考驗, 生命中最長的一天

去年的6月對羅禮彬來說是人生最大的轉捩點，也是充滿挑戰的一個月。當時的他處於與時間賽跑的狀況，又得面對與生命中最重要的人——老婆與女兒生離死別的考驗。

小凱欣在新加坡醫院觀察3週後，情況卻不樂觀，體重也預期中理想，惟醫生卻以生命為重，即刻做出移植肝臟手術的決定。

手術長達14小時

每次的手術都存在一定風險，母女倆長達14個小時的手術對羅禮彬而言非常難熬，悲喜交加的心情充斥他的心理，只能在手術室外靜靜的守候與祈禱，期待手術室的至親能堅強。

“捐肝臟的彗菁上午7時被推入手術室，下午3時才出來；小凱欣從上午10時就被一名麻醉醫生抱入手術室，到了晚上9時手術才宣告成功。”

手術後的11天，小凱欣都是在加護病房度過，她的身體與四肢都是插滿針管，令羅禮彬、公公、婆婆、外婆和伯伯等人倍感心疼，有者見狀眼淚不禁流下來。

由於太太彗菁須在家裡休養，照顧小凱欣的責任就在羅禮彬的身上。小凱欣在加護病房的第十天，羅禮彬看見女兒患病後半年的微笑後，彷彿整個世界都變得很美好。

羅禮彬坦言，他們夫婦倆在未啟程前往新加坡前，醫生曾慎重問了他們意見，而他果斷的做出移植肝臟手術的決定。

“雖然這個決定很難，不過動手術還有一絲希望，若不動手術就全無希望，因此我們決定放手一搏。”

遇見生命中的“貴人”

在新加坡醫院數個月，他認識了許多的患有同樣病症的父母，而羅禮彬在此時遇見了生命中的“貴人”。

“他是一名老師，也是一名虔誠佛教徒。老師經常都到醫院探望小凱欣，去年8月小凱欣動第二次手術時，他也是全天候為小凱欣誦經祈福，並夢見小凱欣的身體散發曙光，小凱欣10年後健康、快樂的在草地玩耍的畫面。

“雖然我不懂這個畫面是否會實現，不過小凱欣就如奇跡般，一次又一次的度過難關，她堅韌的意志力讓我們夫婦倆更加堅強走下去。”

他說，小凱欣的事情讓他學會感恩及真正領悟到人間有情，尤其是《大都會》、熱心人士捐助，馬大醫院和新加坡醫院醫護人員無私與大愛的精神，更是令他感動不已。

已停止募捐勿轉發電郵

“馬大醫院的一名醫生在小凱欣被送到新加坡醫院時，更是破例的親自聯同護士一起坐上救護車，全程護送凱欣到新加坡治療。”

他衷心感謝《星洲日報》讀者、親戚朋友、同事，以及一些熱心人士的慷慨解囊，透過星洲基金和電郵方式捐助，終讓女兒完成肝臟移植手術。

“目前我們已停止向公眾募捐手術費，因此公眾受促勿再轉發電郵，以免被人冒用名義籌款。”
隨著小凱欣的進展良好後，他們夫婦倆也喜與其他同樣境況的父母分享經驗，增加父母的信心，

同時也鼓勵父母別輕易放棄自己的孩子，而是用真誠的心，堅持地守護孩子。

你知道嗎？

小凱欣甫出世肚子鼓大

2008年10月22日，來自蕉賴的羅禮彬（31歲）與森美蘭州波德申的李彗菁（30歲）在結婚3年誕下愛情結晶品，全家上下滿心期待新生命的到來，女兒小凱欣在110天被證實患上天性膽管阻塞。

突如其來的消息令年輕的羅氏夫婦難以接受，抬頭問上天，為何會是他家的凱欣呢？然而，他們沒有太多埋怨的時間，只能把握每分每秒陪伴孩子。

凱欣在3個月大就接受第一次的手術切膽手術，可是卻在8個月大時肝臟出現硬化現象，腹部腫脹積水，腰圍更達22寸。

鼓大的肚子令她無法像一般的嬰兒般翻身、爬行，更別說是站立和走路，夫婦倆被告知後小凱欣情況惡化後，即刻做出為孩子進行肝臟移植手術的決定。

小凱欣通過星洲日報基金協助，以及公眾人士慷慨解囊下，終替凱欣籌獲50萬令吉的醫藥費，讓小凱欣到新加坡接受肝臟移植手術，而捐肝者就是其敬愛的媽媽李彗菁。

星洲日報／大都會‧2010.03.04

http://mykampung.sinchew.com.my/node/94559?tid=6

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Kai Xin as of 26 February 2010

Kai Xin has been discharged two days ago after 10 days of hospitalisation and antibiotic therapy was given. Yesterday, the doctor repeat the blood test and showed the liver enzymes are in normalising trend and diagnosed the fever was caused by viral infection.

During the 10 days of hospitalisation, Kai Xin has made a new friend namely 'Shuen Shuen'. She is 2 month younger than Kai Xin and also Biliary Atresia baby. She admitted to UM on the same day with Kai Xin due to fever caused by viral infection. She had succeed after Kasai procedure due to underwent the operation within 60 days (Golden period) after born. Shuen Shuen has to take few months to recover after the operation and now her jaundice is totally gone and liver is functioning well. Excellent!

Haha, she is more chubby than Kai Xin and very active and cheerful. Same, we will wish her and her family happy and healthy forver.

Also happened in CNY period, The Lokes has received a phone call from a friend who know few months ago. (The boy's mommy has learnt that Kai Xin has underwent liver transplant operation in NUH and would like to get more information about transplant for her son 'Ayden'). Ayden has just celebrated his 4th birthday last month. Ayden born with Alagille Syndrome which make him one very special baby in 100,000 births. Alagille Syndrome is a genetic disorder that affects the liver, heart, eyes and other systems of the body.

Recently, Ayden is warded in hospital as he fractured his left arm ulna and right leg femur. Same as Kai Xin last time, he also need to undergo the liver transplant operation as soon as possible. Now the family is appealing to all now, to help Pray for Ayden. For further details, please read here.

To family of Ayden, please to stay strong, never give up and miracle is always there.

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GONG XI FATT CAI!

Dear all, we would like to take this opportunity to wish everyone GONG XI FATT CAI and may Tiger year bring more JOY, HAPPINESS, GOOD HEALTH, PEACE, GREAT FORTUNE and PROSPERITY to EVERYONE.

After Kai Xin had mild rejection near the year end of 2009, now she is doing well. Last week, we brought her to repeat the blood test in UMSC, the blood result shown the liver is functioning well. Nowadays, she is eat well, play well and catching up her developments in progress. Latest is standing and walking with support, calling "Ah Ba, Ah Ba", "Ah Ma, Ah Ma".

Initially, I would like to post this update on 14 Feb 10 ("Nian Chor Yat"). Due to Kai Xin has developed fever on CNY eve and she admitted UM on "Nian Chor Yee". So now, her fever is settled down, and the liver function is improved compare to the day she admitted. The doctors will continue the blood tests and antibiotics for her next few days.

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Kai Xin as of 15 January 2010

Thanks for all the well wishes. Sorry for the late update.

The result from the checkup last Thurday in NUH was fine. Kai Xin is back in KL and all seems well but we'll have to keep her closely monitored.


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