BioEQ gel

BioEQ is a natural cream developed by ABR (Asia). It is a natural gel with leech extract. It was introduced to us by Sarah when she visited us in Hong Kong this past September. The fact that leech (the blood-sucking wormy thingy that's black) is one of the major ingredients gave me goosebumps in the beginning . But after I saw the  pictures of before/after comparison of over 30 individuals (grown-ups and youngsters, normal intelligence and the special needs), I have to give it a try.

Today is the first day of trial.  I just apply it over Jason's face and neck. It has no fragrance and it's not sticky.  It feels a little cool and Jason doesn't mind it.  In fact, I'd like to try it on my face too and see if it will slow down aging and remove those wrinkles that start to creep on my face. Stay tuned for miraculous comparison pictures (I hope).

Jason's MRI update

Finally.....

The year-long investigation that was initiated since we relocated from Canada to Hong Kong is getting closer to an end....Or put it this way, there would be no more invasive investigation like MRIs or lumbar puncture to be done.  The neurologist Dr. Fung suspected earlier that Jason may have iron deposits in the brain and requested another MRI to zoom in the suspicious area. If there is, he would be one of ten cases in the world. Thankfully, the latest report says NO iron deposit is found.   I consider this a relief because that means Jason does not need to go on drug trial and be a guinea pig of any kind.  However, it was confirmed that both the cerebral and the cerebellar are shrinking suggesting Jason's disability is a progressive case......Not the most beautiful picture...but he is still doing fine as of now!  Other than his droopy head that refuses to come up, he is an alert young man...giggling when we talked about his "girlfriend" in the school bus.  We are also enjoying our daily piano "practice" and Jason would be banging on the piano joining me as a duet.  His "bangs" used to be weak in the beginning, but now they are strong and purposeful.  Talk about improvement!

Since the investigations in Hong Kong have brought us back to square one, with no formal diagnosis for Jason, Dr. Fung suggested we get in contact with Dr. William Dobyns in U of Chicago again (whom we've corresponded a few years back) and see if he has any new information from his research.

I have since then written Dr. Dobyns an email and hopefully will get a reply soon.

Meanwhile....there are more "imminent" things to deal with.  Jason's pimples!

Puberty has arrived and today I had to buy a cleansing gel for his pimples....have yet to perform a "facial treatment" on my son.  Would be fun.

Oh....if you want to know more about cerebral atrophy...here is what I got from the NIND website.

What is Cerebral Atrophy?

Cerebral atrophy is a common feature of many of the diseases that affect the brain. Atrophy of any tissue means loss of cells. In brain tissue, atrophy describes a loss of neurons and the connections between them. Atrophy can be generalized, which means that all of the brain has shrunk; or it can be focal, affecting only a limited area of the brain and resulting in a decrease of the functions that area of the brain controls. If the cerebral hemispheres (the two lobes of the brain that form the cerebrum) are affected, conscious thought and voluntary processes may be impaired.

Alex Sutton in Hong Kong

The idea started budding in June when my colleagues were curious about the mineral salts that I was taking.  I brought up the idea to Alex and asked if he would consider coming to Hong Kong to see some patients. Not knowing how many families I would get, Alex agreed to stop by Hong Kong after he visited Singapore.  After all, we have been talking about meeting each other for a long time since 2007 - the year he first evaluated Jason online.

Alex is a little older than I thought.  But that does not affect the way we communicate. I enjoy having conversations with him as there is so much wisdom and so much to learn.  He is also very humble asking me not to introduce him as Dr. Sutton, but just call him Alex.  He is super observant and his comments are often humorously pungent when he talks about the Americans and the people from the "other China" who were flocking over the TsimShaTsui area.  (He definitely has picked a wrong hotel - right where the China-Hong Kong Ferry Terminal is).

His two-day stay here was fully booked with appointments. I was there all day to help him (in fact, more to lend support to my friends and family) but I truly appreciate the fact that he was showing me how to do facial diagnosis.  We managed to have 16 families booked and they all were pleased to have met him.
This therapy is still very new and unheard of in Hong Kong and I am sure when people start to benefit from it, words will start to spread out.

My new helper was curious about what Alex did to Jason so I showed her some pictures of Jason's eczema.  The change was so amazing and she asked why I didn't share them online.  So here they are...Jason's eczema before and after.  All I did was give him the prescribed minerals and remove whole eggs from his diet as per Alex's suggestion. No nasty steroidal cream.  Pretty amazing eh?

Feb 4, 2008

April 5, 2008

   

Old Videos of Jason

I was organizing some old VHS videos and their digitized version yesterday and had so much fun looking at baby Jason. In this video, I was asking him to let go of his hands and stand up tall.  And he did it....just like that. He was such an adorable kid by all standard and even though he was considered developmentally delayed at that time (2 1/2 years old), his alertness and responsiveness made it quite hard to associate that with "mental retardation".
When I watched these videos two years ago, I'd feel quite sad as if he has "lost" some of his skills.  But today when I watched them again, I didn't have quite the same feeling. I feel so blessed that I was able to capture those precious moments for memory, just like any parents would enjoy watching the toddler videos of their grown-up kids while commenting on how they have changed for the worse as they grew up.

Next week, he'll be having another MRI and we may be closer in finding a diagnosis for him. No matter what  happens, Jason is a blessed kid in a blessed family and that will not change.

Jason's vision

Never have I imagined that I'd be searching for iPad apps for children with CVI (Cortical Visual Impairment) - that is, visual problems caused by the brain rather than the eyes.  We were suspecting (including the optometrist) whether he has optic nerve atrophy just a few months ago, but today we are seeing the impact of ONA already.

March 2011

July 2012

It's getting almost impossible to take a nice picture with Jason as he doesn't seem to be able to locate the camera and his pupils are not responding to light at a normal speed. His smile seems to go with the vision too.  It's sad....but we will not let this defeat us.  We will continue to live life to the fullest as long as there is love.  I am still hopeful that this could also be a teenage thing and that I will be able to show off his adorable smiles again.

Meanwhile, I have a prayer request for my little boy (correction: Big Boy):  that he will be able to maintain or even regain his vision so he can continue to learn and experience this beautiful world around him and that he will continue to be surrounded by people who care about him and nurture him everywhere he goes.

Love can move mountains. Nothing is impossible.
Miracles are still in progress....

Wheelchair assessment

We took Jason to the orthopedic dr at Duchess of Kent who thought Jason's back and neck is bending too low. It looks almost like a hunch but the difference is that his spine is not stiff and he actually has the ability to hold up straight .... but only if he wants to. The Dr. refers us to the OT at Duchess of Kent Hospital for a wheelchair assessment. She is of the opinion that we should get him a new wheelchair that can tilt in space allowing him to half-lie on the chair at an angle.  We went there to try a couple of "tilt" wheelchairs but the more it tilts, the more Jason bends his head/neck to resist the gravity.  That tells me his head-bending is his choice. Yet the OT still thinks this is the only solution (other than fixing his head position with a head band that is attached to the headrest)  and this solution would cost us $24000 HKD. Cost aside, both Dad and I are quite unhappy by her non-professionalism. The fact that a tilt wheelchair is not gonna help is quite obvious yet she still recommends us doing so.

I know Jason is a tough case and I don't expect anyone to have a quick solution to any aspect of his well-being but I expect a responsible opinion or at least an honest one admitting that there is nothing we can do to help. I know she may feel frustrated  because whatever she suggested (including the body brace, and a chest band she made - and she took the wrong measurement in the first fitting) didn't seem to work for Jason.  And I am sorry.  I want so much to tell them about ABR Therapy, the primary curve, etc... but I know it's a waste of my time and she will think I am crazy.  So now she is transferring our case to another OT, calling it quit I guess.

Fortunately, Jason's PT and OT at school are very nice and they are giving us the advice we need.  Since they know Jason so much better, they agree with us that a tilt wheelchair won't help. So we will take that off the agenda for now. Hopefully his neck will get strengthened enough through ABR to hold up again soon.

How to heal from Gastroenteritis and Fever with no drugs

Jason was said to vomit in the summer centre last Wednesday.  Daddy went to pick him up and Jason vomitted a few more times at home, and developed fever.  I just recovered from gastroenteritis so I am thinking maybe he got the same virus. I told Daddy to give him Sodium Sulphate (Hyland's #11) every 4 hours as advised by Alex Sutton.  As I went home after work, he has stopped vomitting and seemed to have calmed down. He was just tired with zero appetite.  We tried light congee and he refused.  I gave him a little cracker and apple sauce and he ate some without vomitting.  At least, something got down in his stomach.  Then I gave him some homeopathic remedies for the fever, ice packs, and lukewarm towels on forehead.

Thursday morning, he still had fever so I did meridian scrapping for him at the inner side of the elbow, the two tendons behind the knees, then the two meridians on the outer thigh.  By the evening, I can tell his fever is coming down.  Friday morning he woke up with no more fever and he wants to eat rice! Saturday night, he was having pizza with us! I am so glad  we handled another illness without seeing a doctor or taking any pharmaceutical drugs. Dr. Mom wins again.

A relaxing night

Tonight, Daddy wasn't at home so for a change, I have control of the TV remote.  Jason and I were doing nothing but lying on the sofa fiddling with the remote control. We were watching Americas Funniest Videos for a bit and surprisingly, Jason was laughing. Especially when I laughed, he even laughed harder.

Then we were sharing an apple together.  He also seemed to enjoy his bites from my apple.... not spoon-fed apple chunks nor mushy applesauce  but a grown-up bite straight from the apple.  He got some pretty strong gulp there too! Wonder why he is still drooling w such oral motor skills.

Oh God, I love every moment with my very disabled boy, who is very able to make me a proud mom.

Jason had a blood work and urine test done last week. The samples will be sent off to Belgium and Australia to test for a couple of metabolic markers.  Lysosomal enzymes, oligosaccharides and CDG.  I don't know in details what each entails, but I clearly remember CDG is a disorder that has been ruled out in Jason's first blood work in Toronto. A brief research on CDG syndrome bears no resemblance at all to Jason's conditions.  There is a chance the neurologist is collecting samples for research purpose only.  But I didn't want to question him as I trust he has his legitimate thoughts. While hoping the tests will give us some more information, at the end of the day, they may just tell us "yes this is what he has" but there isn't anything we can do.  

This is the dilemma parents like us have to face. To test or not to test...that's the question. But as long as we are not putting Jason through any undue suffering, we thought it's at least something we can do to take a step forward.

Happy Friday
I had a great day today.
I came home elated with joy because of some innocently sweet comments from my students.  A primary 3 boy said a matter-of-factly that he likes me because I am beautiful, the other said she likes me because she learns a lot from me.  Then another class of kindergartenders hoorayed because they got to have a 2-hour class with me.  Two hours of phonics? Even university students found it hard to concentrate for 2 hours.  But these kids were still pumped up all the way till the end. 

Oh...last but not least, (this happened the other day), as I stepped into the classroom with these four little girls sitting there, one of this girl named Sarah, suddenly clapped her hands in excitement.  That makes me feel really important...ha. What a great day to see motivated kids like this.  This more than makes up for the other annoying moments of my teaching life.

Gooood morning!

We started off this morning with a heart-melting laugh.  Our helper was trying to get Jason up for school and is changing him with his eyes still closed.  Then the iPod alarm went off for a few minutes and Jason suddently opened his eyes and complained.  "Ho Cho" (too noisy) is what he said. This is really funny and surprising to hear this from him and we both had a good laugh.

Wish there are always moments like these to start each morning!

EAR INFECTION protocol

EAR INFECTION protocol
I had one on Tuesday. In fact, it started a few days back when I felt my ear tube kind of stuffed. Then I felt pain behind my ear like pinched nerve. Alex (Dr. Sutton) gave me this prescription below: 

5 silica, 1 Ferrum Phos, and 1 Potassium chloride, dissolved in half a cup of hot water, sip slowly while hot (like a cup of tea) and take it 5 times throughout the first day.....on getting up in the morning, after breakfast, lunch evening meal before bed. Then, take it 4 times the next day, 3 times the next day twice the following day and once only on the last day.

Wednesday was my first day, then Thursday I was already 80% better...no more nerve pain. I can feel some "movement" in my stuffed ear though, like fluid of something.

Anyway, just want to share this protocol and keep this on record for future reference. Yes, you don't always need anti-biotics for ear infections.. and don't get the vaccination for ear infection. Your babies already has more than they can tolerate!!

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".

Ferry ride

We took Jason on a ferry ride last week taking advantage of the nice Spring day.  Weather was a bit cool and windy but it's much better than heat and humidity. Our "trip" started from Tsimshatsui and I showed him the Culture Centre, the ice-cream truck, the pier, and the men fishing down there.....Jason liked the bumpiness on the deck as we went aboard the ferry and laughed hysterically.  He apparently enjoyed the experience so we did it twice.  Why not? It only costs us $3 each way.  He also repeated a few new words with me.  So proud of him.
Here is a picture of him overlooking the harbour.  His trunk has maintained this curvature for quite a while now but Sarah from ABR said this is actually a positive as he is returning to his "primary curve". Let's hope the next phase will come soon.  One thing that worries us also is his contracture at the knees. Growth is a strong force right now and I am praying that this too will be addressed by ABR.

Visual Evoked Potential

Jason went thru a test today called VEP. He was put to sleep after a dose of hydro chlorate. Then electrodes were adhered to his scalp. The flash stimuli were used this time as opposed to the checker patterns done many years ago in Toronto.
It's supposed to measure the time (latency) it took for a stimulus (flash) to travel from the eye to the back of the brain where the visual cortex lies. Jason's result is like this;
P100 latency: 120ms (same for left and right eye)
Amplitude: 4.72uV for the right, 0.89uV for the left

The optometrist said the norm was 110ms so he was not far from the norm. And the fact that there is a recordable amplitude means he doesn't have a strong case of optic atrophy. So he said....

Of course, the inquiring mind of me as usual would search for more info on Google. What I find is that this result is typical of someone with optic dysfunction and not what the optometrist said as "within normal limit" unless there is a different norm in his lab. He did mention that the amplitude for the left eye could be interpreted by some as insignificant. In other words, the response is so weak that it could be considered as negligible. Now that is a concern cuz does that mean Jason doesn't show visual response even to light? He then said some people would repeat this test and may show a different reading. In fact he had to do it three times today to obtain a proper reading. So what does that tell us of Jason's vision? I really have no clue.
By the way, we were supposed to do a similar test for hearing but he woke up so that has to be rescheduled. But I am debating again as to the value of doing it.

First, this is not exact science as there can be factors affecting accuracy of reading. Second, what is this "science" reslly telling us? I know jason's vision is not "normal" per se. Does this quantify anything? Does that tell me how much his visual cortex "receives" and what is being processed? Not at all. The optometrist seems to tell me jason's optic nerve is not too bad (referring to previous observation that it's slightly pale), but the result says it is not "fine". Shall I repeat the test for the purpose of scientific inquiry? Unlikely. Now that I know this optometrist a little more. I guess he is the "half-cup full" type of person who is reluctant to be the bearer of bad news. While I remain "cautiously optimistic" about jason's development, I guess I will wait to see what the neurologist and the paedietric opthalmologist would say in the next appointments.

Efforts won't be wasted. Jason's coming back.....again!

Efforts won't be wasted, so true. Over the past few days, we've noticed some noticeable changes in Jason. 
In the previous post, I was mentioning things we used to do to help him.  So this past week, I have been digging mentally into my "medicine box" and see what else can be done to help my boy.

I used some of Svea's neurodevelopmental exercise for vision such as pleoptics, pupil stimulation etc... I used Bonnie Brandon's Reflex Integration Protocol with Cold Laser Light Therapy.  ABR is finally a routine now for Jason, both intense ball and supercharged ball rolling.  On the nutritional support side, I also gave him Methylcobalamin (B12) which seems to boost his energy up. On top of that is the regular administration of Alex Sutton's cell salts, fish oil, Magnesium Citrate, and probiotics.  I am still looking for a supplement for his eyes to hopefully slow down the atrophy.

In a nutshell, the observations over the past 4 days are noticeable and more than just subtle.
- He held a bun in his left hand while we pushed him on his pushchair.  he was able to feed himself while the chair is in motion, and he did it marvellously clean and the eye-hand-mouth are amazingly well-coordinated.
- Instead of bending his head and upper trunk, he was able to prop up in a nice position and keep his head up.
- When we went home in a taxi at night, he was sitting up tall and looked outside the window paying attention to the night views
- He said bye bye to me without me asking for it. (Usually I had to ask and wait for more than 30 sec to get a response and sometimes I won't even get a response.)
- He was helping actively when we put on his jacket. I asked him to sit up straighter and he responded by propping his trunk up.
- He was rolling over the bed for one roll...something he hasn't done for months.
- Daddy saw him propping up in a 4-point crawling position in bed....the day after I did the Landau reflex and the STNR with laser ....coincidence?

Anyway, I am grateful to God that I feel we're back in the driver's seat, that we can still do something about Jason's progress.  But that means we can never stop.  As the name of our blog says it right.  After all, it's a miracle.........in progress.

Optic nerve atrophy

Atrophy - an ominous word that every patient hates most. It is defined as the "decrease in size or wasting away of a body part or tissue".  Jason's condition was never given an official diagnosis other than the fact that his cerebellum has stopped developing during conception for some unknown reasons.  But luckily we were given the assurance that it will not shrink, i.e. it is not a case of atrophy.


When he was around four years old we took him to Sick Kids Hospital in Toronto to have his eyes checked.  The then retiring opthalmalogist told us his optic nerve looks pale.... an indication of mild optic nerve atrophy.  But then he corrected himself after a couple of months in the next check...saying maybe his eyes need some checkup.  Having ruled that out, we still noticed his vision wasn't 100%.  He has mild strabismus and focus issues.  When he looks at you, it's like he is looking through you. Then, when he was around seven, his eyes became more "normal". No surgery, no glasses, strabismus is gone.  I attributed this to the things we've done such as crawling to help with his convergence, vision therapy, ABR machine application on the occiputal area, g-therapy, etc.... 


Having said that, there were still moments when I suspected problems.  I would cover one of his eyes, and he would be fine. But if I switched to cover the other eye, leaving what must be the "bad eye", he would be irritated and seems to get scared.  Then there was the observation that he would use his fingers to "feel" the cheerios on the table in front of him, instead of looking for them. He would also close his thumb and index fingers into a pincer thinking he got the cheerio, when in fact he did not.  We've always known that cerebellum affects vision and the judgment of distance so we thought that can be explained by that.


Now...the term optic nerve atrophy comes back to haunt us again. This time it's coming from the opthamalogist at Queen Mary Hospital. Meanwhile, the optometrist at Duchess of Kent says it's only very mild. In any case, this is a good reminder that atrophy is not a static condition. We need to constantly watch out for it and combat it should it gets worse sooner than you thought.  I am definitely revisiting all the therapies we have done before and there is one thing I haven't done....nutritional therapy for eyes in particular. I already got some ideas. Omega 3, lutein, zeaxanthin, B12 methylcobalamin etc....will be studying more in the coming days.

Yes...every problem should have a solution.  Don't let it come at you.  Fight with your greatest might especially when God is behind you, nothing should stop you.

Flu is like Fate....

Flu is like Fate. You know it's coming, but no matter what you do, you simply can't stop it from coming at you. In it's face, you'll lose power, you'll lose strength, you will even lose your say cuz you can't even decide if you can go out because it will stop you. You lose confidence because you look awful and you can't talk. You disappoint your boss, your co-workers, your friends and your kids cuz you'll be breaking promises and failing commitments. Forget all about your plans, now you just want to go back to "normal".
But there is one good thing : your husband will love you more because he treasures these rare moments of silence when you are finally not talking ; )
Furthermore, you will appreciate the time you were forced to stay in bed with a brain so fogged up that can't even think. Ancient Chinese wisdom said it right "小病昰福＂。("Minor ailment is a fortune".) Good luck to you who had the FLU!

Human Cloning? What do you think?

I was asked to express opinions about  human cloning on one occasion. I started off differentiating between cloning the entire body (reproductive cloning) vs cloning certain cells/tissues/organs of the body as potential cures or treatments for originally incurable diseases (therapeutic cloning).  My opinion was one of outright objection for reproductive cloning as it poses serious threats to family structure and the human race.  Imagine cloning technology falling in evil hands for malicious intentions, the potential damage is not unlike what we saw in Science fictions and movies, where horrific giants brought about massive destruction of the world.
When it comes to therapeutic cloning. Organ cloning for medical purposes seem to have great potential.  Imagine a patient with a failing kidney would not need to wait for a donor nor would he need to worry about side effects after the transplant. However it touches a very sensitive and controversial boundary of bioethics. For example, I can foresee people using cloning to prevent aging even death.  If this is the case, what is to become of our human race? Is it all good that nobody ages and nobody dies? How about population control? How about food and resource scarcity? Do we then rely on genetically engineered foods and eat vegetables that never grow in soil?

But I am throwing a question here as food for thoughts.  To all parents out there with children who are disabled in one way or another:  If someone offered to clone a good brain out of the not-so-good brain of your child and put it back into your kid's head, would you say yes?

Due to my own religious belief, I had no hesitation to that answer and would definitely say NO.  I believe everything happens for a reason and we are who we are under God's master plan of our lives . Cloning is human attempt to play God and would only bring about more disasters than good.

Welcome to share with me your thoughts. 

To do or not to do, that's the question

Can't believe I haven't touched the blog for more than a year - the year when we returned the whole family from Toronto to Hong Kong. So many great things happened and so much to share, but too little time. I began to work again after being a stay-home mom for ten years, and that's a big adjustment for me and Jason.

But what's most unbelievable is that, ABR came to Hong Kong with me! What kind of good luck is that? We had our first satellite session last week and it felt great to be able to do that. No more long-distance driving, no more snow-covered roads. Just a relatively easy subway ride. Then Sarah reminded me of this blog, so here I am again.

Just as we are learning the new ABR techniques, we saw the neurologist in Hong Kong to open a file for Jason. Here in HK, the neurology team is divided into the neuro-motor/rehab team and the diagnostic team. This doctor we saw yesterday is responsible for the diagnostic team. He suggested that we do a lumbar puncture to help give us more information about his condition. he also mentioned dystonia. This is the first time a Dr. used "dystonia" to describe Jason's movement disorders. At the time he said it, I wasn't sure I agreed with his observation. But after some research, I can see where he's coming from. He also suggested possible administration of dopa drug. On the other hand, he said the chance we yield any conclusive dx is less than 5%.

Here the decision is ours to make. To do or not to do? That's the question.