My 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 hope for miracle but nothing happened...Suddenly I became a switching lady. When I called up TM service line, the auto answering machine would keep on asking me to wait as all the customer service officers were busy. So, I held on for 10 minutes then stopped. Repeated the process for 3 times and finally gave up. That night my hubby was so 'pekchit' or desperate and decided to turn his Blackberry into a modem but his Curve did not have 3G, a few images took him 2 hours to upload...A used to be 10 minutes job taking up so much extra time...
I waited on the next afternoon to call. This time, the called got through immediately. But as soon as I had finsihed on the fault reporting. Was told they needed at least 24 hours to restore the line. So, I was very 'am tui' or upset as due to the inefficiency of TM "100" helpline, I got to wait for one more day...
So, Sunday evening I could no longer take it anymore. I told my hubby I got to find the backup internet service and wanted to buy a prepaid mobile broadband. We went to Tesco Seremban to shop for one. After asking around for the charges and the services, I decided to take up U-Mobile even though this was not a popular mobile service provider in Seremban. I would have taken up Digi if only my house got the line signal. But recently Digi line was not stable in my house. outside was fine though. I did not have any intention to donate my blood to mosquito though...
But to register a line needed 2 hours or so, while waiting my hubby brought me to New Town Coffee so that we could clear up our emails. Suddenly I realized I was kind of addicted to internet services, it has become as important as a mobile phone though lower priority. I had been relied on the internet to get most of my info and staying connected to my distance friends. When it was out for a while, I had problem adjusting to it. I had just added to one more attachment in my life...
Luckily things were back to normal now. My stremyx is back and I still got 29 days of U-Mobile service. From this experience, I learnt 2 things. First, there is one new area of me that I have to learn how to let go...Second, sometimes bad luck may not be bad after all. Without Streamyx had forced me to explore other options of internet. And I found out that mobile broadband was equally good or even slightly better than streamyx...A blessing in disguise.
KF
Wrote on 8 Aug 2011
Monday, August 8, 2011
Saturday, August 6, 2011
Food War
I 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 all my kids don't really care about how nutricious is the food, what they want is the good tasty food. Typically deep fried crispy food with all the rich sauces and flavour. No matter how many times I have told them what's the benefit of each food. Wasted all my effort...I really envy those moms that are able to have kids that will eat on healthy but plain food. I guess it'll never happen in my family.
When they were younger, it was much easier to enforce my way of cooking over their appetite; a lot of vegetables and very little meat/fish/egg/beans. My favourite food is all in one brown rice porriadge or all in one fresh blendered fruit juice. But they ended up with the "bamboo" shaped body. Naturally this mother would be blamed...Very soon, my kids were getting smarter, they started boycotting my food. So, I had no choice but to give in. That ended up with very limitted choice of food that they take...They favourite food are fried egg, fried boneless fish, fried potatos, candies, ice cream, chocolate, biscuit.
With our society getting richer, most of the parents would spend money on junk food for their kids to make their kids happy. Their love a lot of time will extend to their kids' friends too. Last time, when I went to school; I only got the goody pack once a year that was on Children Day. But nowadays in the kindergarten, almost everyday there's a birthday party going on in the school. After the birthday party, the birthday kids would pass around a big bag full of goodies. So much so it had becomed a trend. Even my kid asked me to prepare them the party pack. But unfortunately most of the time those food were not home cooked food. Even when you prepared home cooked food, the kids won't enjoy it. So, the goodies ended up to be kids' favourite but unhealthy food. They were mainly artificial junk food with lots of coloring, flavouring and preservatives; some were even made in China...I do not want to be prejudice, but recent news on the China food industry just kill my confidance over them. These goodies bags have been the point of the war between me and the kids. Whenever I stopped them from having their goodies, they would get very upset and think I was overacting. To them, the other moms were not like me. So, their words hit me inside. I was thinking should I just give in so that they would enjoy their junk food? At the same time, I saw the bad side effect of controlling the food too. My kids would find all ways and means to sneak in the junk food from my mom's house. They would keep the food in their pillow, throw the food wrapper underneath my cupboard/bed....
Till now, a war would still take place whenever the junk food come to my house; even though I had started keeping one of my eyes closed. And most of my relatives thought I was overcontrolling my kids' food intake. To them, I shall just follow the tide and join the crowd. If one understand the word 'You Are What You Eat' thoroughly, one would understand why I do so. I am not surprised why nowadays children have so much behavarior problem cause the food played an important role...
KF
Wrote on 6 Aug 2011
And all my kids don't really care about how nutricious is the food, what they want is the good tasty food. Typically deep fried crispy food with all the rich sauces and flavour. No matter how many times I have told them what's the benefit of each food. Wasted all my effort...I really envy those moms that are able to have kids that will eat on healthy but plain food. I guess it'll never happen in my family.
When they were younger, it was much easier to enforce my way of cooking over their appetite; a lot of vegetables and very little meat/fish/egg/beans. My favourite food is all in one brown rice porriadge or all in one fresh blendered fruit juice. But they ended up with the "bamboo" shaped body. Naturally this mother would be blamed...Very soon, my kids were getting smarter, they started boycotting my food. So, I had no choice but to give in. That ended up with very limitted choice of food that they take...They favourite food are fried egg, fried boneless fish, fried potatos, candies, ice cream, chocolate, biscuit.
With our society getting richer, most of the parents would spend money on junk food for their kids to make their kids happy. Their love a lot of time will extend to their kids' friends too. Last time, when I went to school; I only got the goody pack once a year that was on Children Day. But nowadays in the kindergarten, almost everyday there's a birthday party going on in the school. After the birthday party, the birthday kids would pass around a big bag full of goodies. So much so it had becomed a trend. Even my kid asked me to prepare them the party pack. But unfortunately most of the time those food were not home cooked food. Even when you prepared home cooked food, the kids won't enjoy it. So, the goodies ended up to be kids' favourite but unhealthy food. They were mainly artificial junk food with lots of coloring, flavouring and preservatives; some were even made in China...I do not want to be prejudice, but recent news on the China food industry just kill my confidance over them. These goodies bags have been the point of the war between me and the kids. Whenever I stopped them from having their goodies, they would get very upset and think I was overacting. To them, the other moms were not like me. So, their words hit me inside. I was thinking should I just give in so that they would enjoy their junk food? At the same time, I saw the bad side effect of controlling the food too. My kids would find all ways and means to sneak in the junk food from my mom's house. They would keep the food in their pillow, throw the food wrapper underneath my cupboard/bed....
Till now, a war would still take place whenever the junk food come to my house; even though I had started keeping one of my eyes closed. And most of my relatives thought I was overcontrolling my kids' food intake. To them, I shall just follow the tide and join the crowd. If one understand the word 'You Are What You Eat' thoroughly, one would understand why I do so. I am not surprised why nowadays children have so much behavarior problem cause the food played an important role...
KF
Wrote on 6 Aug 2011
Thursday, August 4, 2011
What Happen Last Christmas Eve 2010
It 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 into it last Christmas eve, a 1 hour drive home turned into 3 hours...To make things worse, I was driving my 15 year old manual geared Nissan Sentra. I had never complainted about having a manual car. But that day, I regreted it. I could only remembered pressing the clutch on and off, non stop through out the journey. Even the Smart tunnel was not too smart on that day, it used to be my savior but not on that particular day. The swamp of travelling South just paralyzed the entire traffic flow right from Jalan Ampang and Jalan Tun Razak junction all the way to Seremban. Luckily my 3 kids (my boy would tag along during school holiday) were sleeping most of the time, else how could their bladders handle such long hours of not going to toilet.
All sort thoughts run into my mind. How nice if I could have flexical car whereby the whole car got lifted up and the wheels could be adjusted wider to eat into the little spaces in between 2 cars. How nice if I have gone straight to my sister house in Pandan Perdana to put up a night to let the traffic cooled down by itself. How nice if I have started my going home journey early. But none of these thoughts helped, they only made me felt worse. So, I decided not to dwell in further...Really slow and steady, I reached home after 3 hours of struggling on the road. That day, I thought my body had become a turtle...But my mind had changed into another animal, a red bull...
So, I had to accept that I just hit on the jackpot that I was just too smart to be part of the migration program from North to South. Sometimes I think Malaysian is pretty much a modern nomat, we will be having massive migration during all the festive seasons.
Tomorrow I will be going to KL again for the girls' infusion. Wish me luck.
KF
Wrote on 4 Aug 2011
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 into it last Christmas eve, a 1 hour drive home turned into 3 hours...To make things worse, I was driving my 15 year old manual geared Nissan Sentra. I had never complainted about having a manual car. But that day, I regreted it. I could only remembered pressing the clutch on and off, non stop through out the journey. Even the Smart tunnel was not too smart on that day, it used to be my savior but not on that particular day. The swamp of travelling South just paralyzed the entire traffic flow right from Jalan Ampang and Jalan Tun Razak junction all the way to Seremban. Luckily my 3 kids (my boy would tag along during school holiday) were sleeping most of the time, else how could their bladders handle such long hours of not going to toilet.
All sort thoughts run into my mind. How nice if I could have flexical car whereby the whole car got lifted up and the wheels could be adjusted wider to eat into the little spaces in between 2 cars. How nice if I have gone straight to my sister house in Pandan Perdana to put up a night to let the traffic cooled down by itself. How nice if I have started my going home journey early. But none of these thoughts helped, they only made me felt worse. So, I decided not to dwell in further...Really slow and steady, I reached home after 3 hours of struggling on the road. That day, I thought my body had become a turtle...But my mind had changed into another animal, a red bull...
So, I had to accept that I just hit on the jackpot that I was just too smart to be part of the migration program from North to South. Sometimes I think Malaysian is pretty much a modern nomat, we will be having massive migration during all the festive seasons.
Tomorrow I will be going to KL again for the girls' infusion. Wish me luck.
KF
Wrote on 4 Aug 2011
Doctors' 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 well spent. My fear was if my girls' turned out not within the expectation, what would happen next...
Unfortunately, their weight gain performance just can't meet up with the expectation...Wei Ling is the one that gave me more headache. Her weight gain was extremely poor. But luckily she still grows in height, or else things will be very complicated...For her to gain 2.5kg, it takes her almost 2 years. Why every 2.5kg is crucial to her, it's because for every increase of 2.5kg of her weight, she will require 1 extra bottle of Myozyme. So, I would track down her weight in every visit to the hospital. But 13 pcs of teeth being removed at the end of 2008 had been one of the major contributor to her slow gain as her chewing ability had been compromised. On top of that, she was very succeptible to infection. Every time she had any cough and cold, her weight will go down quite significantly. So her weight gain was like a roller coster. At 7 year old now, she only weighted misarably at 15kg (around 5kg below par)...She was referred twice to two different dietitians, but her small appettite just can't feed in the menu that the dietitians wished her to have. Else, she would be complaining of stomach ache. Then the doctors suggested G-tube, direct stomach tube feeding. But even the thought of her going thru the OT process was killing me, so the option was out. Finally, I have given up to ask her to feed as per recommended. As long as she is well and healthy, I don't care how slow she is going to gain her weight.
Unfortunately, their weight gain performance just can't meet up with the expectation...Wei Ling is the one that gave me more headache. Her weight gain was extremely poor. But luckily she still grows in height, or else things will be very complicated...For her to gain 2.5kg, it takes her almost 2 years. Why every 2.5kg is crucial to her, it's because for every increase of 2.5kg of her weight, she will require 1 extra bottle of Myozyme. So, I would track down her weight in every visit to the hospital. But 13 pcs of teeth being removed at the end of 2008 had been one of the major contributor to her slow gain as her chewing ability had been compromised. On top of that, she was very succeptible to infection. Every time she had any cough and cold, her weight will go down quite significantly. So her weight gain was like a roller coster. At 7 year old now, she only weighted misarably at 15kg (around 5kg below par)...She was referred twice to two different dietitians, but her small appettite just can't feed in the menu that the dietitians wished her to have. Else, she would be complaining of stomach ache. Then the doctors suggested G-tube, direct stomach tube feeding. But even the thought of her going thru the OT process was killing me, so the option was out. Finally, I have given up to ask her to feed as per recommended. As long as she is well and healthy, I don't care how slow she is going to gain her weight.
KF
Wrote on 4 Aug 11
Wednesday, August 3, 2011
Why 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 natural libra, this kind of 50-50 thought has made me written down few posts but never wanted them to be posted until today...
Continue going to hospital every 2 weeks for my girls' infusion and seeing different patients is the key reason behind reviving my blog. I hope I could do something for the patients, at least to share with others what had happened. Hopefully someone may benefit or learn something out of this.
It's the same reason why I want MLDA to be known to all so badly. It's really the real human lifes that are in my mind. I had met up with 2 other Pompe babies but they both died after treatment due to late diagnosis. One after 2 treatments and the other one after 2 years of treatment. The latter sadden me more as he was showing improvement but still it's still too late for him. If they had been treated earlier, things will be totally different. I had seen a Taiwan Pompe boy had his treatment started within a month old, his condition was so good that I could not tell his difference to another normal boy. That was during my Taiwan trip back in 2007.
And I had seen cases of patients that are no longer eligible for treatment because the conditions had extended to their brain. A guideline being practiced in most parts of the world that treatment will not be offered to any patient with neuro/brain involvement. Sad and frustrating but it's true and it's happening before my eyes...
So, you see it's hard not to share with you what I see and how I feel...
KF
Wrote on 3 Aug 2011
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