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Friday, September 30, 2011

Ghaziy's ward

Being diagnosed with SMA wherein the prognosis is death requires few options which me and hubby chose to let Ghaziy to have his sweet period in a hygienic and infection controlled environment i.e. the hospital itself.

A lot of sacrifice were made that lead us to the above decision. We wanted the very best for Ghaziy. And nursing at home will never be among the good idea. Thus, here we are a happy family in Pediatric High Dependency Ward (PHDW).

Wednesday, September 28, 2011

Life is full with surprises

With Ghaziy's presence me n hubby's life is always full with unexpected circumstance.

Knowing to conceive Ghaziy in April 2010 was the very best surprise I could ever imagine.

Delivering him 2 weeks from the due date was another surprise that rise my adrenalin.

However... Not all surprises are that great to be accepted.

On 1st May 2011, the little guy turned blue and was admitted to pediatric HKL. I had never imagine that he could be so much ill.

Me and hubby had an instinct that Ghaziy is different and isn't developing like his peers. We searched and google the possibility that he could be among children with cerebral palsy, floppy baby and delay development child.

It turned out that he holds worst expectation could one have. SPINAL MUSCULAR ATROPHY TYPE I (SMA).

Anyone heard of it? I had never heard of it. The horrifying surprise was when the doctors informed me and hubby that our dear son will not make it to the age of 2. Adding to it is that most babies couldn't even make it to their 1st birthday and most only holding till they're 6 months.

It took me weeks to understand the disease. Yet, accepting the fact that my baby will soon leaving me is terrifying. So, what I did is not to think negative and always put myself in optimist zone.

Tuesday, September 27, 2011

Chatty little Ghaziy

Just arrived in hospital this morning, I could hear a lite voice "aaahhh..". Guess who was it?
It was Ghaziy.. And that was what he's been doing the whole day. He begins to be chatty little guy. Even his nurses noticed it. They claim that he would called for a person to sit next to him and to actually talk to him.

He continues to make people to converse with him until isya' and he suddenly turn sleepy. And half hour later he was fast asleep..

It was great and overwhelming looking at his growth.. Perhaps next post I'll write about Ghaziy's disease to share with the public..

Here are some pictures of him taken 3 months ago when he was in early admission to paeds HKL...

Sunday, September 25, 2011

Being mother....

Ppl always say, "it's never going to be easy being a mother".
Heard that from mama ever since I was a kid but never thought it's going to be REALLLLYYY tough.

Come join me for a piece of journey being a mother to a very very very special child named GHAZIY.