I was amazed today when I saw the videos from school. It was taken at school to show me the new program designed by the PT who joined the school only recently. Yet I was told she came with lots of experience and was really good with kids like Jason. After I looked at the program, I had to admit that was so right. I was in awe cuz I haven't seen Jason doing these things for so long. PT and doctors alike never thought he could still do this looking the way he bent his back and scooped his head down. Yet, this PT was able to spot the underlying potential that Jason has and use the proper tools/equipment to bring it all out. The video would do much better in describing what I was trying to say.
This is something I won't get in Toronto because the PT in the school system there are supposed to provide "consultation" only and they rarely work on Jason hands-on nor on a daily basis. I am just so thankful for these selfless and hardworking people who are helping children like Jason at school. I also thank God for guiding me back here. Everything happens for a reason...yes indeed.
Hope you enjoy them as much as I do. God is so good.
(will try and upload videos in the next post)
Saturday, June 16, 2012
Saturday, June 9, 2012
Update on MRI
OK....a delayed update. The neurologist finally called last week to discuss about the MRI. He confirmed there is shrinkage in the pons (part of the brain stem). The cyst is not to worry about as it's just clumps of cerebral spinal fluid in the space where the missing cerebellum is supposed to sit. What's not captured in my last post is that they found suspicious iron deposits in the brain that may indicate a rare form of genetic disease. Naturally, I asked him the name of it and he said, knowing my next plan of action is to search the internet, there is only 10 known cases in the world and information is limited. What he recommends now is a repeat MRI to confirm his findings and if it is positive, then further DNA tests (blood test) need to be done (in US). If that's confirmed again, he would recruit Jason to the international clinical trial.
What's amazing is that despite the scary-sounding report, I feel quite calm. God must have listened to all your prayers. Not only that, Jason is getting quite alert these days. He bowel has been our friends lately....doing its job almost every day. (yeah, no more suppository). Then, Jason even picks up new words from TV news, and is seemingly watching and enjoying soccer games from TV (they call it football match in Hong Kong). This so contradicts with all the worries of atrophy and degeneration in function and it's quite ironic how the timing turns out. It's like that's God's reminder to us that He can do anything and everything if that's His will. We will take each day at a time, and continue to work with him as if there is no atrophy. Like I always said, if one day, a prophet tells you that your 2-year-old is meant to be a mediocre person in life. He will not be smart, nor will he make a lot of money, and he will never go to University, well he barely gets by high school, what will you do? Will you not send him to the kindergarten? Will you treat him as if he has no future? Of course not. Most likely, you will still give him the opportunity to learn, to explore, be loved, be nurtured. Yes, and that's what I will do...........even though it means 30 years of kindergarten, yes, that's what I will do.
What's amazing is that despite the scary-sounding report, I feel quite calm. God must have listened to all your prayers. Not only that, Jason is getting quite alert these days. He bowel has been our friends lately....doing its job almost every day. (yeah, no more suppository). Then, Jason even picks up new words from TV news, and is seemingly watching and enjoying soccer games from TV (they call it football match in Hong Kong). This so contradicts with all the worries of atrophy and degeneration in function and it's quite ironic how the timing turns out. It's like that's God's reminder to us that He can do anything and everything if that's His will. We will take each day at a time, and continue to work with him as if there is no atrophy. Like I always said, if one day, a prophet tells you that your 2-year-old is meant to be a mediocre person in life. He will not be smart, nor will he make a lot of money, and he will never go to University, well he barely gets by high school, what will you do? Will you not send him to the kindergarten? Will you treat him as if he has no future? Of course not. Most likely, you will still give him the opportunity to learn, to explore, be loved, be nurtured. Yes, and that's what I will do...........even though it means 30 years of kindergarten, yes, that's what I will do.
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