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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