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Arghhh..it was a busy day in the ward after nearly 2 weeks of calm ambiance surrounded the ward.
but for Ghaziy he has his own schedule to follow..hihihihi..he actually sleeps a lot hen the ward is in hassle..
the most exciting achievement for him today, he manged to stay prop up for 15 minutes without frown on his face in addition to a sweeeeeeeeeet smile.. Alhamdulillah.. held him on my arms another 15 minutes makes him smile ear to ear and he'll be excited whenever I rocked him a bit.
The little guy really knows how to enjoy himself..
need to cut short or today's post and no picture available as the broadband is a bit slow. See you tomorrow insyaAllah..
Thursday, October 13, 2011
Monday, October 10, 2011
Bittersweet moments with Ghaziy
The day begins with a terrifying moment as I entered the ward. Cardiac monitor shows that Ghaziy's oxygen rate is 90% whilst the little guy signing his discomforts. In between the nurse started the suction procedure on him, which took less than a minute he just turned pale and the oxygen rate was dropping fast to 8%.
That was a scenario that make me decided to let Ghaziy remain hospitalized for the past 5 months. My adrenalin runs rapidly each time facing what the medical team call 'desaturation'. It's among COD of an SMA patient. Apart from that, COD could be due to lung infections.
As a mother I do wish that Ghaziy's disorder is just a nightmare and i'll wake up next morning holding him like a normal child BUT I rest the thought and hope to the almighty Allah to decide what's best for the little fella.
As we speak, the little guy is sound asleep whilst his tummy being filled up with milk.
That was a scenario that make me decided to let Ghaziy remain hospitalized for the past 5 months. My adrenalin runs rapidly each time facing what the medical team call 'desaturation'. It's among COD of an SMA patient. Apart from that, COD could be due to lung infections.
As a mother I do wish that Ghaziy's disorder is just a nightmare and i'll wake up next morning holding him like a normal child BUT I rest the thought and hope to the almighty Allah to decide what's best for the little fella.
As we speak, the little guy is sound asleep whilst his tummy being filled up with milk.
Wednesday, October 5, 2011
A special baby...
Salam to all followers. Thank you so much for spending a moment on my blog. Even though Along said that my grammar was poor, I do hope you guys could digest my expressions (I never edit and write whatever that come across my mind). As for you, my dearest Along, 'Sorry, teacher..hihihihi'.
Let's talk about Ghaziy's behavior. He is a simple baby with a very low demand. He will never cry unless he is uncomfortable. He doesn't complain unless there is a need for him to complain.
Situations where he'll be complaining:
- pass motion;
- breathing discomfort;
- looking at strangers face without prior introduction;
- tired of watching videos.
He is a baby with high level of understanding, that's what all his doctors said. Any action or procedure against him need to be directly and softly informed to him.
Today it is almost 2months he hasn't come across with bad desaturation. We were so thankful to Allah the merciful we need not to face that our precious Ghaziy struggling to catch a breath. We could rest him from the biPap (his ventilator) for an hour to stare at his oval shape face grinning to us. Note that he will be EXTRA cautious with his breathing whenever interference is made to hi biPap. I actually need to ask for his approval to loosen or to fix the biPap mask or he'll get upset and could turn pale or worst, he'll stop to breath.
Doctors described Ghaziy as a baby with high socially gifted and full with expressions. Talking to him is like talking to an adult and it's important to make him understand every action taken or done to him. My first impression listening to what the doctors said was, 'Subhanallaaah'. My child couldn't move not because of he is retarded or brain disfunction but he only lost his survivor motor neuron in his DNA. Hence, his energy is fully concentrated to his mind causes him to be bright and intelligent.
I'll be sharing with you guys on nature of SMA child in my next post. I learnt a lot from the web and built my strength through digesting and understanding SMA facts. Accepting the facts requires me to go beyond simply relying to doctors explanation. Insyaallah, we'll meet again daaaaa...
Let's talk about Ghaziy's behavior. He is a simple baby with a very low demand. He will never cry unless he is uncomfortable. He doesn't complain unless there is a need for him to complain.
Situations where he'll be complaining:
- pass motion;
- breathing discomfort;
- looking at strangers face without prior introduction;
- tired of watching videos.
He is a baby with high level of understanding, that's what all his doctors said. Any action or procedure against him need to be directly and softly informed to him.
Today it is almost 2months he hasn't come across with bad desaturation. We were so thankful to Allah the merciful we need not to face that our precious Ghaziy struggling to catch a breath. We could rest him from the biPap (his ventilator) for an hour to stare at his oval shape face grinning to us. Note that he will be EXTRA cautious with his breathing whenever interference is made to hi biPap. I actually need to ask for his approval to loosen or to fix the biPap mask or he'll get upset and could turn pale or worst, he'll stop to breath.
Doctors described Ghaziy as a baby with high socially gifted and full with expressions. Talking to him is like talking to an adult and it's important to make him understand every action taken or done to him. My first impression listening to what the doctors said was, 'Subhanallaaah'. My child couldn't move not because of he is retarded or brain disfunction but he only lost his survivor motor neuron in his DNA. Hence, his energy is fully concentrated to his mind causes him to be bright and intelligent.
I'll be sharing with you guys on nature of SMA child in my next post. I learnt a lot from the web and built my strength through digesting and understanding SMA facts. Accepting the facts requires me to go beyond simply relying to doctors explanation. Insyaallah, we'll meet again daaaaa...
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).
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.
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...
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.
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.
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