tag:blogger.com,1999:blog-14501445450183114882024-03-05T17:03:30.596+08:00Pompe Mom's DiaryThanks to all the prayers, help and support from friends and families, my girls have 2nd chance of life.
Still, I hope that there will be a well and sustainable medical system to protect the right of getting free treatment for my girls and all the other LSD patients in Malaysia one day...Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.comBlogger25125tag:blogger.com,1999:blog-1450144545018311488.post-91171352442859538002012-01-11T00:25:00.000+08:002012-01-11T00:25:28.685+08:00School Holiday Blue!I can't recall now when I was younger, how did my mom or grandma handled me during school holiday. I only remembered that I was playing whole day and not at home, I was out in the field or in my friend's or neighbour's house. And I remembered too I was out of house after breakfast, then back to house for a while for lunch, then took a nap and back to field until late evening. In other words,Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com0tag:blogger.com,1999:blog-1450144545018311488.post-11746572317075443332011-10-24T11:40:00.000+08:002011-10-24T11:40:38.354+08:00Taiwan Trip - Tao YuanOn early morning of 22 Sep 11, we were all realy to go to airport at 7am. Called a cab the nite before and asked for a bigger taxi cause we brought 2 big bags for checked in purpose. However, when the taxi turned out that day, it was the new Proton Saga with NGV being installed. The taxi driver was quite upset to see my luggages as the caller station never mentioned about my request. ItKian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com0tag:blogger.com,1999:blog-1450144545018311488.post-18434636498007505322011-10-12T15:44:00.000+08:002011-10-12T15:44:28.905+08:00Before Trip to TaiwanIt had been a long time that I failed to write down anything for almost a month, felt a little bit of guity but was really out of time...
Before going to Taiwan, MLDA was invited to a dinner orginized by Persatuan Peniaga-peniaga Kecil at Min Kok Restaurant on 19 Sep 11, just 3 days before we flied off to Taiwan. We were hoping to meet up with Dato' Sri Liow Tiong Lai as he was the invited VIP Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com1tag:blogger.com,1999:blog-1450144545018311488.post-44359093578500577392011-09-15T13:10:00.006+08:002011-09-15T16:01:36.961+08:00A Great Fund Raising Piano Concert From Rare Disorders Society SingaporeOur family plus my parents in law attended the RDSS organized fund raising Piano Concert in KK Woman & Children Hospital in Singapore on 3 Sep 11. It was a very rushing trip, my girls were at KL for their infusion on 2 Sep 11. Then we were at Singapore the next afternoon. Nevertheless I enjoyed the concert very much. RDSS has done a great job. All the children that appeared on Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com0tag:blogger.com,1999:blog-1450144545018311488.post-58825573780457779892011-09-14T16:30:00.004+08:002011-09-14T16:46:15.488+08:00I am going to Taipei soonIf I didn't meet up with Kwee Ming today, I probably will still delay the write up of this post; cause my house is in a big mess...He told me he was following my blog, that gave me encouragement to write one today...It's like almost 3 weeks since I last wrote one...As a housewife, I scared most of school holiday...No free and leisure time at all. I need a long long time to regain my Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com0tag:blogger.com,1999:blog-1450144545018311488.post-86111720230355581652011-08-27T11:15:00.000+08:002011-08-27T11:15:19.483+08:00我的婆婆妈妈,我的守护神!这一路走过来,有两位我一定要谢谢的贵人;那就是我的家婆和我的妈妈。如果没有他们我想现在的我不知会是怎么样?
每一次她们都在我有需要的时候伸出双手,扶了我一把。小时候的玮玲是医院的长客,久不久就来一个肺炎,间中或来一个大泻不止。搞到我差一点精神分裂。。。现在回想起也不知自己是怎么样走过来。只有惨惨惨的回忆。。。
她们两位老人家总是我一个电话过去,下一刻(通常是家婆,因她比较急性而且也住得比较近)或第二天(我妈都是安顿好老爸,然后自己撘巴士来)就到我家帮我照顾两个大东瓜。让我在医院陪伴小瓜时没有后顾之忧。
我的妈妈甚至在我生了老二及老三后(这是老爸也被逼跟过来),陪了我老半年才安心回老家。虽然她还有老爸都不太适应我家的环境,但都硬硬撑了下来。我的三餐都是她老人家在张罗,想想还真是有点惭愧。但同时也是超幸福的。。。
而家婆总是在每两个星期五我带两位公主去KL放药时来我家报到,帮我看看Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com3tag:blogger.com,1999:blog-1450144545018311488.post-62932283145137040862011-08-27T10:28:00.000+08:002011-08-27T10:28:06.433+08:00I Decided To Get A Portable Hard Disk...My old Toshiba notebook is running slower nowadays, unlike the earlier day when my sister passed me. It used to run pretty fast. But not now...So, I have brought it to see my friend in S2 that knows how to fix up the notebook. I thought he would be telling me that my PC was too old and needed to be replaced. Then I could have a good excuse to replace my notebook. But no, that's not what he told Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com1tag:blogger.com,1999:blog-1450144545018311488.post-69832624491129862032011-08-20T23:22:00.002+08:002011-08-23T11:55:20.348+08:00MPS II Brothers From MersingEven before I joined in Malaysia Lysosomal Diseases Association (MLDA), I had a thought of writing down the story of different patients I met in the hospital. A lot of them were sad stories and some may need help physically or financially. But I didn't have the confident that I could write a beautiful story then. Still now my English command was still the same yet I realized if I could shareKian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com1tag:blogger.com,1999:blog-1450144545018311488.post-63376880541334888722011-08-11T10:54:00.000+08:002011-08-11T10:54:08.289+08:00A Great Fighter MomI met with Puan Sunarti in HKL early this year, couldn't remember the exact date now. From did not each other, we had become good friends. She has 2 MPS II (Hunter) sons. MPS II patients will not grow tall, their height will stay around 100-120cm even when they grow up. Besides, they have stiff joints, weak vision and poor hearing. For the less fortunate one the conditionKian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com1tag:blogger.com,1999:blog-1450144545018311488.post-15169721259864096632011-08-10T18:49:00.001+08:002011-08-10T18:50:36.186+08:00All Went Well FinallyOh I finally presented my Pompe story in front of all the std 5 students. There were around 50 of them from 2 different classes. Finally all went well, what a relief...
But I was sweating initially, why? Cause I got to change into the 3rd notebook to prepare for the presentation. The first school's notebook seemed to have the screen up, the voice up but somehow it can't detect my pendrive. Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com1tag:blogger.com,1999:blog-1450144545018311488.post-24638390345392406212011-08-10T01:32:00.000+08:002011-08-10T01:32:12.124+08:00Tomorrow Have A Presentation On Pompe For Yen Ling's ClassmatesOh, I am getting nervous...I can write though not very good but talking is a totally different thing for me. An area that needs improvement. Something that I am not good at all...
My hubby is supposed to present but was called to a meeting by his boss last minute. So, I got to replace him. Even though not ready but still need to do it. Like the Cantonse saying "Ting Ygan Siong". What to do...
Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com0tag:blogger.com,1999:blog-1450144545018311488.post-33182663739434481932011-08-09T16:34:00.001+08:002011-08-09T22:03:30.837+08:00Another Angel Bid FarewellJust got the news from Patricia through FB that a Malaysia Pompe baby girl Xin Er passed away 2 days ago in Singapore. Even though she had started getting Myozyme for some time in Singapore but she did not get well after the infusions. Another case of late treatment...So sad...
I didn't have a chance to meet up with her yet, I thought I may see her this coming 3 Sep 11 at RDSS Fund Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com1tag:blogger.com,1999:blog-1450144545018311488.post-89731803801342042872011-08-09T09:10:00.000+08:002011-08-09T09:10:08.397+08:00I Found Make A Wish FoundationIn MLDA (Malaysia Lysosomal Diseases Association), I see 4 groups of children.
The first one is the luckiest one that they are diagnosed and treated. I am extremely grateful that my girls belong to this category. The patients could be having Pompe, MPS 1, MPS 2, MPS 6 or Gaucher...
The second one is still considered lucky that they are waiting to be treated. Due to the continuous Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com1tag:blogger.com,1999:blog-1450144545018311488.post-23546570563425734272011-08-08T18:21:00.000+08:002011-08-08T18:21:50.913+08:00One Day Without StreamyxMy streamyx was down on 6 Aug noon. When streamyx was line down, I would say very 'kan koh' or difficult. There were few emails that I need to reply but can't do anything. There was this flight that I would like to book but could not do anything....There was few uploads that my hubby would like to do but could not do anything...For the rest of the day, I would try to turn on my modem and Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com0tag:blogger.com,1999:blog-1450144545018311488.post-57501461998350991872011-08-06T12:44:00.000+08:002011-08-06T12:44:04.419+08:00Food WarI had been very health conscious ever since I was a child. This habit of mine still carry on till today, though I had kept lowering my standard. So, I have put up the quite a high standard to my kids initially cooking them the healthy food. However effort not appreciated most of the time, sometimes even my hubby would complaint of the food being too plain. He wanted more flavour.
And Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com0tag:blogger.com,1999:blog-1450144545018311488.post-3697669271991316212011-08-04T22:03:00.000+08:002011-08-04T22:03:08.700+08:00What Happen Last Christmas Eve 2010It has been 5+ years that myself, Yen Ling & Wei Ling travelled to Hospital Kuala Lumpur every 2 weeks for the girls' Myozyme infusion.
There was a period of time that I wished their infusion could be done in Seremban instead of KL. Driving in KL is no fun especially on Friday's evening. Things got a lot more ugly when the Friday happened to be a holiday's eve. And guess what, I bumped intoKian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com1tag:blogger.com,1999:blog-1450144545018311488.post-12592214524572695132011-08-04T15:15:00.001+08:002011-08-04T16:18:57.077+08:00Doctors' Expectation - Part 1
There were times that I was so stressed up by the doctors' expectation. What they hope for are my girls to remain in healthy condition with continous positive progress and consistently acceptable academic achievement. I could reason out why doctors have such expectation. Mainly because they will need to answer to higher levels to see how effective is the drug. And if the medical budget is Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com0tag:blogger.com,1999:blog-1450144545018311488.post-40033120228541508972011-08-03T14:44:00.007+08:002011-08-03T15:25:20.667+08:00Why Do I Start To Write After 3 Years?Well, I was not sure if I really want my family story to be known to the general public 3 years back then. I had this other worry that someone might just kidnap this and change into theirs, suddenly Kian Foon became someone else.But at the same time, having a blog seemed to ba a fashion then, as a homemaker with self controlled free time, it looked kind of bad not to have one...So, being a Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com0tag:blogger.com,1999:blog-1450144545018311488.post-28500274701062418382008-10-09T17:00:00.002+08:002008-10-09T17:01:07.536+08:00Hope for Pompe(From left: Picture taken during Wei Ling 4yr old birthday)We have 3 lovely kids, each one of them are so special and different. The eldest one is Yen Ling, she is 7+ years old; she is a smart little girl with lots of wits. The middle one is Sze Hong, he is 6 years old; he is the most energetic one that keep on complaining about his boredom. The youngest one is Wei Ling, she is 4 years old; she Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com0tag:blogger.com,1999:blog-1450144545018311488.post-39455512841118129772008-08-01T18:43:00.003+08:002011-08-03T11:30:42.390+08:00My Only Healthy Boy...My son Sze Hong is the luckiest guy among the three siblings. He is most likely not affected with Pompe, he has got a very solid muscle. We can't be very sure now though. It's only when he has reached his adulthood then the doctor may agree to run test on him. We do not have so much budget for all the patients' family to run the genetic test. I will take for now that he is a normal and healthy Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.comtag:blogger.com,1999:blog-1450144545018311488.post-60267832754495820972008-07-17T14:44:00.001+08:002011-08-03T11:32:11.261+08:00Yen Ling Wants To Keep Her Hair LongYen Ling grows up like any other little girl, she wants to keep her hair long. She wants to tie up her hair just like the pretty girl in her school. However, I did not want to make it an easy job for her. I had recently set up a challenge for her that is to hold herself straight up all the time. Then only she can have her hair as long as her wish.Due to her un-noticed Pompe problem (weak muscle) Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com0tag:blogger.com,1999:blog-1450144545018311488.post-6027644857094014102008-07-14T16:42:00.001+08:002011-08-03T11:33:36.712+08:00Wei Ling Can Stand Up On Her Own!Since Wei Ling started walking, it was last January that she acquired this skill. However, her lower limbs and waist muscles are still not strong enough to hold her from squatting position to standing position without any support.I told her that she will need to acquire this skill if she wants to go to school like her brother. So, I started to get her to hold on something and pull herself up. Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.comtag:blogger.com,1999:blog-1450144545018311488.post-47741283820192642022008-07-14T16:04:00.001+08:002011-08-03T11:34:31.683+08:00Something Joyful to Share...Another victory story for another Pompe family. Yeah....This time it's in Sarawak. This family also has got 2 Pompe children. It's the story of a sister and a brother. The mother is a single parent. She is such a brave and loving mother, she takes up the whole responsibility even though it is such a tough one...Both Bong's sibling were borned to be as normal & as healthy as any other kids. They Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.comtag:blogger.com,1999:blog-1450144545018311488.post-46378755929379075542008-07-03T16:33:00.002+08:002011-08-03T11:38:44.581+08:00The DreamHave you ever have a preview dream ? I do...I know I dream everyday but I almost instantly forget totally about it the next morning as if there is no dream at all. But I just could not forget about this particular dream. It's really a scary one.I dreamed of having a baby girl with deformed limbs. The baby girl looked quite terrible. Then this baby talked to me while she was still in the womb. SheKian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.comtag:blogger.com,1999:blog-1450144545018311488.post-46419789940171547272007-12-28T09:43:00.001+08:002011-08-03T11:40:36.122+08:00My JourneyEver since my girls started their treatment with Myozyme (the missing enzyme) infusion April 2006, I have been visiting the hospital once every 2 weeks. Every time, it's a half day trip upto KL. In every of my visit, I will be meeting some other children that suffered from some other genetic problem.It thought me a lot of thing. At least I know my girls are very fortunate, they don't have any Kian Foonhttp://www.blogger.com/profile/13236262573104954220noreply@blogger.com