Jason's Miracles!

It's been a roller-coaster ride over the past few weeks.
From the abyss to cloud 9.
I am still in disbelief.
Yes...it's a miracle.....No... it's a chain of miraculous events.
Towards the end of March, Jason was clearly deteriorating.....flexed knees, spastic hands, bedwetting, beginning of pressure sores, less talking, always sleepy with droopy heads. Then come the muscle spasms and epilepsy as revealed by the EEG which may indicate, as pointed by another very resourceful ABR mother, a rare condition called "Continuous Spike-Wave in Slow Wave Sleep Syndrome" (CSWS).  I never heard about this before but it can be a new direction to look at.  After I got in touch with Dr. William Dobyns from Seattle Children's Hospital, his assistant started to connect with me to collect DNA samples so they can do some genes matching, while trying to get all the udpated MRI and images from the neurologist in Hong Kong.  Everyone's goal, at this point, is to try and understand a little more about Jason's condition.  Nothing is mentioned about treatment, other than the vicious prescription given by the minimally-informed pediatrician on call.

On the other hand, we started giving Jason the cell salts (minerals) as per Alex's latest instruction on April 2, topped up with coconut oil-powder combo.  I diarized his changes every day and starting April 13, his muscle spasm stopped....and until now, it has never come back.  Not only that, he seems to be more alert and present.  Today, he's "talking" to me.  He was totally alert when I was talking and was exhilarated to know that I am "talking" to him.

Like Alex,we were at a loss of what was happening.  We can't explain what we see.  If his brain was truly shrinking, then there must be something we did right during the past few weeks that succeeded to arrest or even reverse that process.  All I can think of were 1) Everyone's prayers.....right when we had almost lost our hopes and when we shouted to the Lord, He listened. 2) Cell salts to the rescue 3) Magic of coconut oil.
All of the above did not involve any drugs, nor surgery, nor forceful intervention and we witnessed the return of my dear son.  This is nothing short of a miracle.

Adding to the above miraculous "healing"..... God has planned another miraculous encounter.
It was last Thursday when I met this lady on the MTR ride back to Tsuen Wan.
This lady bumped into an acquaintance on the train and she was telling what she was doing and that she was visiting old people with strokes and providing Tui Na (traditional Chinese manual therapy) and/or acupuncture service. Instinctively I extended the antennae on my head and listened to her attentively.  When I heard her saying the ONLY criterion for service is that the recipient has to be physically handicapped, I told myself I HAD TO TALK TO THIS LADY.

When the train stopped at Tsuen Wan, I approached her directly and told her about Jason.  I showed her Jason's picture and immediately told her Jason IS physically handicapped to catch her attention. We exchanged business cards and she turned out to be the General Secretary of  "Leisure & Health LifeHouse" 樂健生活館  under the FTU Employment Development Service which is sponsored by one of the biggest political party in Hong Kong. I believe she is the trainer there as well and she agreed to visit Jason to see what she can do to help him.

Ever since Jason's deterioration began, we were looking for different ways to help Jason (including stem cell therapy) and acupuncture was back in our mind.  But daddy thought the benefits may not worth the hassle of travelling back and forth so mommy was googling like crazy hoping to find a good one near where we live, to no avail.  God knows what I want and He grants me MORE than what I asked for.  She sent this lady to our door.

When this lady visited us last Saturday, she performed two full hours of tuina, focusing on important meridians to boost Jason's "qi" (energy) and to relax his muscles.  After it's finished, Jason was so relaxed he fell asleep like a baby.  Jason's auntie and cousin were there and their jaws were dropped when they saw Jason's usually tight legs relax with knees open outward. What's more miraculous is that, she charged me just a fraction of what's considered a "fair price" and she even gave us a box of Godiva chocolate as a gift.

Today is the second day following the massage session and Jason was not fatigued like before.
As I said earlier, Jason all "here" and was "talking" to me.
I am thankful.
God has once again shown His glory through our weaknesses, and through Jason.

Just did a quick google search for the meaning of the name "Jason",  it says:

Meaning of Jason: "the Lord is salvation" or "healer".

I did not know that when I decided to use this name.
Was this coincidence or was it all in the divine plan of God?
God knows.  I mean......God knows.

Jason has seizures

I didn't put a punctuation on the title on purpose because I am debating. Would it be more appropriate to use a question mark cuz I am not sure if he really has it? Or should I use an exclamation mark to express my devastation? But I certainly don't want to use a full stop because its not confirmed, or is it? 

Last week was a tough week. We took Jason to three hospitals on four separate days for different tests and checkups. Tuesday to Yan Chai ER; Wednesday to Duchess of Kent for seating; Thursday: Yan Chai Pediatrics; Friday: Prince Margaret for EEG. All these stem from the recent development of muscle spasms in his hands/arms.  I thought I got it under control (I still think so) with immense help from Alex Sutton (the minerals doctor) and coconut oil, but school teachers and neurologists alike think further tests are necessary. So an EEG was ordered to read the brain waves during his spasms. Just like a haunting ghost, you can't find it when you want it. During the full 90-minute section, (this I must give credit to the very nice and patient technologist), the spasms did not occur. He was sitting quite calmly and cooperatively with just minor twitches on one hand. But the technologist said the graph is undoubtedly showing abnormal brain activities, with or without seeing the spasm. I wasn't sure what he meant. The last EEG for Jason back when he was 7 was not normal as well but Jason was fine. The neuro then said there's no need to treat the graph if Jason is fine. But this time the Pediatric neuro at PMH said Jason has epilepsy and prescribed him Epilim200 a first line drug for seizures.  

I saw the list of side effects and I was appalled by them. Fatigue, lack of attention, tremor....aren't those exactly what we are trying to treat? When asked what improvement in Jason would I expect from the medication, she didn't answer directly. She just said the EEG would be better. But thats not what I want! I want JASON to be better!  

Back home, we put the prescription aside and continued w Alex's minerals. (Mag Phos and Cal Phos 5 each dissolved in water, 4-5 times a day. Plus coconut oil 2 teaspoons two times a day, and a powdered coconut with MCT oil mixed in his snack drinks).  Adding everyone's fervent prayers into the protocol, Jason has been spasm-free for four days and counting.  

Meanwhile, I finally got back in touch with Dr. Dobyns. Thanks to the Facebook Cerebellum Group. Turns out he has moved to Seattle so he didnt receive the old emails.  In less than two days, he did reply and he reviewed scans back when Jason was 6 years old.  He says Jason's case started as a complex one, with the new EEG indicating seizures, it's got even more complicated.  He is the leading expert on brain malformation in kids.  If he doesn't have an answer I don't know who will (except God). He now asked our neurologist Dr Fung to send him his updated scans and reports. They will connect w each other and see what other tests need to be done to enable us to learn a bit more of his condition. I will see Dr. Fung in two weeks. 

Alex (now doing his Hong Kong clinic) saw Jason today. Jason was very excited to see him and reached out his hands several times for him.  He also said thank you to Alex many times and laughed at Alex's jokes.  I cannot believe we didnt take a pic or a video for the moment!

Nonetheless, Alex did tell me with the new development, even though spasms are controlled, I should not have any false hope to expect Jason will get "better". In fact he said to expect the worst. Nobody knows when "the worst" would happen and he said that may not be a bad thing for him.... and us. 

I just wish I could turn back the clock to when he's 5 or 6 when there were so much hopes and room for improvement.  But I know God has His will. It's not going to be easy but He will guide us in every step and I have all of my family, my dear friends and my churchmates walking with me. 

In the news today: bombs in Boston Marathon killed an 8-year-old who was waiting for his dad on the finish line.