My Blog

Monday, November 21, 2011

Thursday, September 29, 2011

RAK: September

Hi! This is my first time participating in RAK, hosted by the beautiful bloggers from Book Soulmates, Isalys & Vanessa. I hope this is the right way to join. =)

Here's my wishlist:

#1 The Lying Game by Sara Shepard

#2 Still Waters by Emma Carlson Berne

#3 Dog Boy by Eva Hornung

#4 Frost by Marianna Baer

#5 Under the Never Sky by Veronica Rossi

If you decide to show me some random act of kindness, I can't thank you enough. If you don't, it's alright. Thank you for visiting my humble blog. =D

You can e-mail me at
aikjane at yahoo dot com

Tuesday, March 10, 2009

Hannah's Video

Monday, March 9, 2009

Hannah's Story

Story by Hannah's mother:
Hannah was born on July 25, 2008. She was 6 pounds 11 ounces and 19 inches long. Two days after birth, it was found she had an enlarged spleen and extremely low thrombocytopenia. Eventually her liver became involved, and she developed slight anemia. Now we are trying to find out what is going on.
Hannah was the “oops” baby that was never imagined. After 10 years of intense infertility treatments, we ended up with nothing more than 3 miscarriages. After grieving the loss of the biological child we could never have, we decided on adoption as the path to create our family.
Our son, Ethan, was adopted from Russia in December of 2001. We adopted Abigail from the same region in Russia in October of 2004. At the time, we felt our family was completed — after all, you can’t have an “oops” adoption!
In January of 2008, we found out that I was 9 weeks pregnant. To say we were shocked and surprised is an understatement. I ended up on bedrest at week 29 due to severe pregnancy-induced hypertension and remained there until I delivered at 36 weeks 1 day.
Hannah is a beautiful baby. I immediately fell in love with her and wanted to hold her every chance I had while I was in the hospital. However, I was exhausted on the second night, and I asked the nurse to take her down to the nursery so I could get a few hours of sleep.
That’s where it all started…Someone felt a “mass” on her abdomen, and then because of her jaundice and bloodwork relating to that, they found that her platelets were extremely low (6000 where 150,000 to 350,000 are normal). She was sent to the NICU because they were worried about spontaneous brain bleeds with platelets that low.
She remained in the NICU for two weeks. During that time she had a platelet transfusion and an IVIg transfusion. Ultrasound had confirmed the enlarged spleen and no head involvement. They were waiting to discharge her until her platelets reached 100,000, but after two weeks, we begged her to be released even though she was only at 66,000.
She didn’t reach that 100,000 mark until she was 8 weeks old. Thank goodness we had her home with us!
At her 4-month birthday, her platelets have remained stable around 93,000 to 106,000. Her spleen is still extremely large, and her liver is enlarged as well (but not as much as the spleen).
However, with all of her internal and blood-related symptoms, she is acting and has always acted like a happy and healthy child. She eats well, has gained weight as she should, is developing on track, etc. We are thrilled that she acts so healthy! She has since developed larynomalacia (poor throat muscle tone) and was accepted into the Early Intervention program due to physical developmental delays (tested at the 2-month level at 4 months old). But socially, she is testing 2 months ahead — easy to see, she just loves people and loves to smile!
We are now working with a team of doctors including a hematologist, hepatologist, opthamologist, and a genetics specialist to try and figure out what is going on. She had a skin biopsy on November 12th, and we just received the results on January 7th. Gaucher’s disease, most likely type 2 or 3, a physical and neurological disease due to a lack of an enzyme needed to process food. There are treatments for the physical aspects of the disease but none yet for the neurological. Her life expectancy is 2, 15, 20 years or so — but we are in a fight to give her a longer and healthier life!
She is an absolutely beautiful and charming baby! She was my gift from God. We were meant to bring home Ethan and Abby first, and then we were given the gift of Hannah.
I am very blessed to have three amazing kids. Please help me fight for the life of our daughter, Hannah.

http://littlemisshannah.com/2009/03/hannahs-first-giveaway/comment-page-1/#comment-681

Hannah First Giveaway

In an effort to draw more attention to Gaucher’s Disease and other rare disease blogs and with the help of some special people,
http://littlemisshannah.com/2009/03/hannahs-first-giveaway/ is going to have their first “Bloggy Giveaway!” They are starting to collect donations from now onwards. Please donate, she need your help.

Tuesday, October 7, 2008

住院的日子

10月2日

从星期一开始，我便因发烧而每天都得到诊疗所去验血。可是，今天倒霉透了，早上8时正，我到 Hospital Seri Manjung 去验血，弟弟也因发烧，所以也得去验血。下午，好奇的弟弟要跟随爸爸去拿报告，我在客厅睡着了，所以没有跟随爸爸到医院去拿报告。大约下午2时许，爸爸回来了。他把我从睡梦中叫醒了。我睁开惺忪的眼睛，问爸爸为什么把我叫醒。爸爸说：“快去冲凉吃饭，医生怀疑你有denggi, 所以要你入院。” 什么！！！我立刻惊醒了。“快点去准备啦！”爸爸又接着说。没办发啦，去准备lo。我一边走去冲凉房，一边抱怨着：“为什么还要住院呢？真讨厌！！！” 洗澡完毕后，我便走到饭厅去吃午餐。过后，我便去收拾我的东西。准备好了后，我们便前往我心里想的 ”地狱” 了。到了医院后，我去探望先入院的弟弟，只见他的手扎了一条长长的针，滴着一包水，我也不知道那是什么水。他的手起了红红的斑点，好恐怖啊！之后，我也去登记，准备入院了。登记完毕后，我被叫进紧急房里（其实里面也不算是紧急之处) 。有一位护士拿了一把针，然后插入我的手背里，虽然我感到很痛，在加上我的家人都不在我的身旁，我真想哭，但是我还是把我的眼泪收了起来。那位护士从那儿抽了血后，她又用一个盖子把针的未端掩住，过后就把我的家人叫了进来，把我送入病房了。到了病房那儿，有几位医生来到我的病床前，其中一位医生拿了一个超级大的针筒，插入我的右手背里。过后，又有一位护士来到我的旁边，又再在我的左手背上插了一针，痛死了啦！现在我的左手背上有2针，右手背上有1针，可是我却没有哭le!!! 护士每隔4个小时就来抽一次血，真是烦人！( 因为我在半夜里睡到一半，就有护士来叫我醒，因为要抽血了)。今天晚上由我的大姐来陪我睡，因为我很怕一个人睡。每当我要去厕所时，还要拿着点滴的东西，真麻烦，而且，每次去厕所时，还会流血呢！可是血不是流出来，是流进我的点滴的管内。就这样我在一整天都在病痛所折磨的情况下过了一天。

10月3日

早上在7 时许醒来，过后爸爸来了，他要带大姐回去了，我这个胆小鬼哭了起来。爸爸说大姐要回去冲凉了啦，一整天在医院陪我了还不够吗。我只好让大姐回去lo。大姐回去后，大医生来了，有一位医生说要送我去怡保，因为那里太多骨痛热症的病人了。我摇着我的头，眼泪又要掉下来了，幸亏这时候妈妈来了，妈妈说我的弟弟还在wad 5 那儿，送我去怡保很不方便。那位医生听后，说如果我明天有发烧的话，他就会送我去怡保，我那时真恨那位医生。下午，我弟弟学校的牧师来为我祈祷，祈求上帝保佑我。( 因为我弟弟的学校是英校，也是教堂) 之后，我的同校却不同班的朋友的父母也来探望我，因为他们也是基督教徒，他们也认识我的爸爸。他们带了椰水和葡萄给我，然后也帮我祈祷，我非常感谢他们所做的一切。晚上7时许，我的大姐又来陪我了，我真的很谢谢她。今天我脱掉1个针了，感觉有点痛，可是我没哭。哈哈！！！

10月4日

姐姐早上又回了，虽然很不舍得，但是我也没办法啊！不管怎样，大姐都已经陪我2夜了。幸好我今天没有发烧，不然我真的要被送去怡保了，那时候，我就会一个人在怡保哭泣。早上9：33，护士把我的第2针拿掉，现在我的左手背上没有针了。今天下午，我的同校却不同班的朋友的父母又来探望我了，他们又给我椰水喝，非常感谢他们对我的好意。今天，特别多人来探望我，过了不久后，我的舅母一家人也来了，舅母带了花蟹汤给我。过后我的外婆也跟随大姨来探望我，大姨带了饭给我，但是我已经很饱了，因为我喝太多水了，然后又喝椰水，又喝花蟹汤，又吃了医院准备的饭，真的要饱到炸了！！！今天我的体温只是稍微高了0。5，医院却不给我出院。在下午5时许，我弟弟出院了，他真好啊！我真想出院，在医院的日子真无聊又恐怖，可是恐怖感比较多，因为我怕一个人，我怕我被送去怡保，怕护士来抽血。。。。。。我真希望我可以出院呀！！！由于弟弟今天出院了，所以今天由妈妈来陪我，妈妈前几天都是陪弟弟的，都没有来陪我，感到有点被忽略了。。。。。。

10月5日

哈哈，我今天体温下降了，医生终于让我回家了！！！我在中午12：30正式出发回家，我感到无比舒畅，真想早日回家呀，现在终于“梦想达成”了！我一踏进家门，就嗅到蚊油的味道，因为前天有政府部门的人来喷蚊油，可是我还是感到很舒适，因为我终于回来了！

10月6日

我今天没有去上学，因为医院给我3天的假期，以前的我，恨不得可以天天生病，然后就不用去上学。现在已经1个多礼拜没去上学，却感到有点伤心，我很想念我的朋友，我的岗位（班长和图书馆管理员)。我真想早日回到学校和我的朋友“相遇”。

完毕 The End

Sunday, July 6, 2008

惨不忍睹的一天

下课前的最后1节，我和我的好朋友一起去点名，我们拿着钢笔去办公室。点完名后，我们便步行回到课室里。一踏入课室，只见级任老师拿着藤鞭，前面站着3名男同学。老师似乎是在审问他们。过后，我听见老师在问天花板上的珍珠是谁丢的，那些珍珠是从珍珠奶茶里所得到的。经过老师审问后，老师获知那是男同学丢的，老师气得打了那位男同学5鞭。那位男同学也很不服，他告诉老师其他男同学也有丢，为何只鞭他一个人。老师叫他说出谁也有丢。他便一一说出来。被说到名字的同学也被鞭了5鞭。老师自己的儿子也被她鞭了1鞭。老师竟然鞭他们鞭到哭了，可是她也不愿意让我们看到她哭，假装转到前面的布告栏看东西，其实她在布告栏那儿拭泪。她虽然不愿意被我们看见她哭，可是我们还是看见了。过后，她又问谁有在课室里吃午餐的人，自己自动举手。一位男同学有在班上吃午餐，可是他没有举手。他旁边的2位女同学，1个是我的好朋友，另1个也是我的朋友，都叫他举手，因为老师说如果没有人承认，她就鞭全班的同学。起初他不肯举，可是经过我2个朋友的逼迫下，他举起了手。他有2个外号，叫"apek" 和"老人"，这些外号是从他的名字所取的，因为他的英文名叫 Lawrence, 这个名字的音有点像老人，老人就等于"apek"，他的名字就是这样来的。他出去后，他的朋友---Wiliam Teong 也出去承认。他也有1个外号，叫wi leng tong.他们2个都是巡察员le, 竟然也在班上吃，我们的校规是规定我们不可以在班上吃食物，他们身为巡察员的，也在班上吃食物，没有以身作则。级任老师打了就算，现在又到校长进来。校长也是像级任老师那样，问谁有在课室里吃食物，谁把珍珠丢上天花板，是谁买珍珠奶茶的。问清楚后，校长1人鞭2鞭，连我的好朋友也被鞭了，她喝过1次，也就是上个星期三。结果，她今天就被鞭了，倒霉极了! 我们全班35位学生，只有10位没有被打，8位女生和2位男生，我们班的巡察员8位里，只有1位没被打。等校长鞭完后，都已经25分了，我们只剩下5分钟的时间去吃食物。嗨，算了，去买1包薯条算了。我买好后，就敲钟了。我带着沉重的心情会课室继续上课了。。。。。。