It has been such a long time since my last update.
To recap, Jason's latest MRI in October 2012 shows not just a smaller cerebellum, but a shrinking brain. According to medical definition: "Cerebral atrophy refers to the loss of brain cells over time. Atrophy refers to a decreased size or wasting away of any part of the body".
There is still no known diagnosis, no treatment, nothing we can do to stop the atrophy.
But since Jason has been a happy camper at school and we're not expecting any progress anyway...so there's no pressure....we are just counting blessings a day at a time.
But we are still trying in all possible ways to slow it down.
ABR, cold laser therapy, meridian scrapping, supplements, etc...
Over the last week, we are seeing sudden signs of deterioration. Daddy and Bella our helper all noticed Jason's hands twitching more and his fists go on a spasm even as he falls asleep. His alert time seems to be shorter and shorter and gets tired all the time. He talks a little less and his spoon-feeding is getting hard as his fist closes so tightly on the spoon. I also notice pressure sores on his sacrum, a sign that blood circulation is poor over his sitting area because he is moving less and less by himself. His knees are flexed (bent) at a bigger angle now and the orthpedic doctor is suggesting a non-invasive surgery called Guided Growth to help him straighten his knees over time. While we are still waiting for anaesthetic assessment for the surgery, we are also thinking about stem cell therapy in China.
A few ABR parents from USA and Canada have been brave enough to fly all over from N.Am to China and did it a few years ago and they've been recommending to me for a long time. But being a Chinese, I know enough not to trust the Chinese. I was suspicious about this even though I know there is a potential yet I really like to wait till it's more mature and regulated. I've met many new friends in Hong Kong who have children with special needs. Many of them have taken their children for stem cell therapy. They all have good experience with it though the change is not miraculous. I am trying to get in touch with other parents and gather as much information as I can to seriously think about its possibility.
I have been praying for guidance on this....and these signs of deterioriation may be an answer? I don't know.
I pray that God will protect Jason from harm, keep him safe from further deterioration, and to keep him smiling and loving for every breath he takes, and to give us strength to protect him and take care of him and love him for what he is to become. Amen.
