Physiotherapy at school

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)

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.

MRI result - preliminary

It's been two weeks since the MRI was done. The result should be out but no calls from Dr. Fung the neurologist. I called the nurse last week and all she said were typical procedures to get rid of me. I was furious. I felt passive and helpless and I want to find out what it says. Today I was at the ophthalmagist clinic at Queen Mary Hospital. Being an opportunist, I asked the dr. if she saw the report already on Jason's record. She's so nice and she even let me read the report right from her computer. I have developed a proficiency in reading medical reports by now to tell that the report doesn't look good. I was surprised to se the word "cerebral atrophy". I even doubted if it was a typo cuz Jason was supposed to have "cerebellar hypoplasia" or "atrophy" if you like. But cerebral?? I continued to read: "......enlarged ventricles...wider sulci....and lastly a cyst on his cerebellum". Last but not least (an even bigger surprise), the cerebellar vermis (the worm-like tissue between two sides of the cerebellum) that was never fully developed since his first MRI, was said to be "intact"! What? Did it grow? If it is really the case, then this would be one piece of good news out of rest. Could this be a mistake? But this is QMH, they are supposed to be the best! The ophthalmagist looked at my response and was trying to explain to me that this is just the preliminary impression by the imaging technician. The neurologist still has to read and compare the old and new films to give more meaningful comments. I am expecting this MRI to compare the size of Jason's cerebellum only. I never expect to have a totally new picture pointing towards potentially a new diagnosis. I have so many question and worries... DH was wonderful in trying to comfort me. So was I, trying my best to comfort myself. I look at Jason and how much he can do....yes, if indeed he has an atrophic brain, it would have been a miracle already to look at what he CAN do! He can eat, he can smile, he can tell us he's hungry, he tells us if he needs to pee or poo; he can hug and kiss, and most of all, he can pray and say "Amen". After our bedtime prayers tonight, I felt really good. After all the worries and weepy moments, I have not lost heart. I have not lost Faith. I still have Hope, and sure there is lots of Love around us. If I have all three of them, why fear? I wrote an email to Dr. Fung via the enquiry email address, (I was upset also that his email address is not public which is common practice for doctors in other hospitals in Hong Kong or Canada) I hope he will answer and invite me for a meeting. If you happen to bump into this post, please say a little prayer for Jason and our family. I know God is behind all these and the new sequel to our wonderful journey is about to begin.

3rd MRI

Jason had his 3rd MRI today at Queen's Mary Hospital. The previous two were done when he was two and six years old. The comparison of his cerebellum at that time was not indicative of any particular syndrome, nor could it rule out a possibility if progressive deterioration. Upon our first neuro appointment in Hong Kong, he suggested we do another to see if there is more information especially the last MRI was already a few years back. We agreed, plus the advancement in imaging technology and resolution nowadays is no way comparable to 6 years ago so hopefully it will tell us more. When we arrived the pediatric ward, I was quite surprised by the friendly attitude of the nurses there. They are kind and very "personal" for lack of a better word. No cold mechanic question and answer, just friendly interaction as if we are there to form a relation. Indeed I saw two young men (later found out they are brothers) in their high teens doing IV in bed. The way they talked to the nurses is like they are a family. One nurse told me many of their patients are there for treatment once a month since they were kids so they are indeed like family. When it's time for Jason to get the catheter injected to the back of his hand, I saw the houseman's (doctor trainee) hand shaking as he directed the needle towards Jason's skin. Who knows if this is his first injection or what but I refrained myself from saying anything. Yet I simply couldn't look at it. Indeed he didn't make it through to Jason's veins. Another nurse (very experienced) came to help and still it took the second needle to put it through. So that's four pokes in total. I've been through this before and it's not easy even for grown-ups. Poor Jason was twitching his face in pain but no crying or whining or struggling. He's my hero and they all said he's a brave boy. Later on, the nurse fed him liquid hydro chlorate to make him sleep. He got limpy very soon but wasn't sleeping deeply. Anyway he was pushed to the MRI room without us. We were told this would take 30min to an hour. But he was there for over 80 minutes. I couldn't help but go check him at the recovery room but no Jason in sight. The assistant told me he had moved in the process so they had to redo it. I couldn't help but think if that means they had to do an anaesthesia injection, and that means my boy had to suffer more. Then it was almost time for me to go to work and I simply couldn't leave without seeing him first so silly me got teary. I called my boss and told him I will be late. The wait was long and finally after one and a half hour, enough time to get your appendix removed, he was out in the recovery room. He is still sleeping. Worried, I asked the nurse if he had a GA injection. Thank God it wasn't necessary. I just hope that the report will give us more information about his condition or better yet, rule out the case of atrophy. Jason is truly a hero and I know God is watching him. He listens to his prayers at night when Jason says "Amen" with all his might.

Happy Birthday Jason x Happy Mother's Day

After a 30-people party last year, I decided to do a quiet celebration with just us and Jason's favourite aunt this year. I know Jason likes bowling so I search and search for a bowling alley in Hong Kong with the special ramp to allow him to play. I only found 2 in Hong Kong, one in E-Max Kowloon Bay, the other is at Belair Garden Shatin, where I used to live as a teen. We were lucky that the ramp was available because there is only one and given on a first-come-first serve basis.   

He had such a great time and was laughing all the time with excitement.  By the second game, he was getting better at the game and his eyes were trying to follow the ball after it's released from the ramp.

Then at night, Jason surprised us by blowing off the candle
for the first time in 13 years! You can imagine how surprised
and happy we were. Hey but look at this picture, Jason himself was surprised too!

Then on Sunday, the children at church gave him lots of self-made cards and presents and even a cake.  One 5-year-old girl even did a countdown for his birthday at home (according to her mom).  She asked her mom to get Jason a birthday cake but later got all worried because she forgot Jason couldn't eat it.  Not only that, she made a birthday card for Jason and stood in front of the church entrance to make sure everyone signed. How lovely! There are two more girls who gave Jason a card and a present too. Jason is ever so blessed with innocent love and friendship. That made my day....really...it's the happiest Mother's Day for me.

Happy Birthday To Me

We went to Kowloon Shangrila for a buffet dinner for my birthday.  Friends and family joined us for a cozy celebration. Honestly, I am never an enthusiast for birthday celebrations.  I still remember when I used to work in a Fund House in Toronto, there was a male co-worker who was giving out invitation around the office to join his 26-year-old birthday party.  I ridiculed the idea and thought really, what kind of a guy would invite co-workers to his house for a birthday party like a 7 year-old?

As I get older (and better?),  I am all the less excited to "celebrate" the process of aging. When each birthday comes around the corner, I can't help but ask myself "just how old are you?"  Unlike the kids who always have their answers ready, I had to do a bit of math to get that answer.  It is like my subconscious mind refuses to grow with the body.

What I see birthday now ....is a reminder to myself that I am loved, an excuse to meet up with friends and family, and a day to be grateful for family, friendship, and health.

It's not about YOU, it's about God’s mercy.

Romans 9:16 says "It does not, therefore, depend on human desire or effort, but on God’s mercy."
據 此 看 來 ， 這 不 在 乎 那 定 意 的 ， 也 不 在 乎 那 奔 跑 的 ， 只 在 乎 發 憐 憫 的 神 。

The Chinese translation says it even better - It is not about how determined you are, nor is it about how hard you've working towards your goal.  Without God's mercy, all can be futile.
It may sound uninspiring and even anti-intuitive to some, especially non-believers. But for those whose life has been touched by God, they will know what it means. 

R.B. Kuiper, once used the following to illustrate the role played by God's sovereignty and human responsibility: "I liken them to two ropes going through two holes in the ceiling and over a pulley above. If I wish to support myself by them, I must cling to them both. If I cling only to one and not the other, I go down."

A more modern and easily understandable way of saying this now is : "I'll do my best, and God will do the rest".