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
Thursday, August 4, 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
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