The kids have to attend more and more appointments - dental and ortho on 12/1, MRI on 24/1. Actually they had rehab on 13/1 but had to miss it. We have decided that those not really important, we have to skip it. Too many appointments will certainly disrupt their schooling. Moreover, we have to plan our leaves too because everytime we go for an appointment, we certainly need to take leave.
During the recent visit for MRI, the kids were scared to go into the 'tunnel'. No choice, I have to accompany them. Don't know how much radiation has got into me. Will it make my cancer worse? I hope not. It was really dreading to listen to the MRI noise, I brought in my book to read while holding their feet :-)
The next appointment will be for skeletal survey. We have seen the orthopedic doctor on the 12/1 and in order to see the progress of the bone, they need to be x-rayed. At this point of time, both of them can walk a small distance. The father has to carry both of them when we go quite a distance like walking to the nearby medan selera for lunch (during hospital appointments). Luckily they are quite light, total weight is around 25 kg.
Of course, wherever we go, people will ask about them, how old are they and what causes them to be like they are. As some point, I get tired of answering. Probably I should write a book about them so that whenever people ask I can just sell the book to them :-) Not a bad idea eh!
Friday 28 January 2011
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2 comments:
PnYati,
Salam, I'm writing on behalf of MRDS (Malaysian Rare Disorder Society). Am looking for parent-speakers to share their experience at our first national genetic disorder which is being planned for June 9/10, 2011 in Klang Valley. Wld you be interested? If you are appreciate, if you cld contact me at allidams@gmail.com. Thanx
I was in the hospital the other day when Haziq's (MPS VI patient)mom (a primary school teacher) was complaining about no more leaves left due to frequent visits to GH KL for ERT infusion (weekly), orthopedic clinic(2/month), eye clinic (1/3 months), ENT clinic and more. It's really tiring at the hearing of it....
I hope in the future, we could have a one stop center for all the disiplines required so that minimal travelling is required. And the quality of life gets better.
KF
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