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!