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Saturday, October 29, 2011

Another happy day

Salam to my followers...

Started my day as usual, it's a quiet Saturday in IPHKL. Greet my little pumpkin Ghaziy with my warmest smile and of course he replied it in his sweetest way. Shukur he was granted a good health recently enabling our moments to be filled with joyful activity.

Resuming our routine (Me, Ghaziy & Hubby) we got him changed into his day clothes. It's a bit special today as I'm trying to put on him a long sleeves t-shirt bought 5 months ago, a day before he was admitted to hospital as part preparation of his 'raya' collection.
It's a bit hard to make him wear T-shirt with his biPap machine and possibilities of him desaturated. I'd whispered to him that he could cooperate as ayah really wants him to wear the shirt all this long.

PUTTING GHAZIY IN HIS T- shirt

Due to the fact that the little fella is on his tummy twenty four seven, I need to roll him and maintaining his breathing stability is part of my challenge. Alhamdulillah he looks find just until I loosen his biPap mask he started to look panic. Thus,I called for assistance from his nurses to roll him back and we did managed to put him into the shirt whilst he's a bit upset and his oxygen dropped for few seconds to 70%.

And a big OMG looking at him in his colorful theme today...

(I'll try to upload the picture of him ASAP..)

Post challenging moment making Ghaziy looks handsome, drove him sleepy...I tucked him to sleep and went off for short breakfast anddrove to my cousin's house in Kepong. I normally do any necessary activities like paying bills, get some new clothes for Ghaziy or making phone calls to my office during this short intervention period (between 11am to 1pm) where Ghaziy is asleep.

As I reached Yun's house how glad I am to look at her newborn princess, Khalila. I've been longing to see her and getting the opportunity even a short meeting lit up my while day. managed to took a picture of her and I even got her passport photo and she's soooo adorable... Eager to see her growing to 5 months age so I can pinch her plump cheek, a nasty thought though...hihihihi

As I returned to Ghaziy, the moment he saw me he said, "aaaaahhhh..." perhaps he's asking me hey... Where have you guys been? So, I showed him Khalila's photo and he's smiling at her little sister whom I dream to make as his playmate. Perhaps one day Khalila is able to visit Ghaziy...

The day continues the same and we have few visitors like atok, nenek and mommy with his 3 musketeers..

It's a fun and happy day and let's fill our heart with gratitude to Allah for granting such a day in our lives...

Friday, October 28, 2011

Back from fever

Assalamualaikum... Feels like it's been a while since my last post..what happened to me?

I did mentioned in my FB wall my anxiety of Ghaziy catching fever cause it's pneumonia madness in hospital. Praise to Allah, my boy is doing well lately save and except he's been a bit naughty after his morning bath causing the nurses extra work towards the end of their night shift. I'll talk about it later. It was me who caught high fever for the past 5 days. It's horrible when you need to be around your child whilst you are carrying virus that you don't even know what it is. You'll be in dilemma of infecting the precious person and feeling guilty of not attending him. You'll felt that the day moves in slow motion and upset when the father of your precious person telling you to keep your distance from the child (though you knew it's the best thing to do). On top of it, as the father to the precious person is your loving and caring husband, he'd also offered you to stay home while he'l accompany the child in hospital. Definitely my answer would be a big NO. My rebellious answer was, "I'd rather rest myself outside the ward rather than stay in bed at home", "who can take me to the hospital if anything happen to Ghaziy when you're beside him and I'm sleeping 'comfortly' at home?"

And I know that my darling hubby couldn't contest to my stern, stubbornness and firm statement. So, be it.. Even I could hardly feel my foot stepping, I walked through my fever days for five days and feeling like it's endless I made it. Now I do appreciate my health. No MC when you have a hospitalized baby who yearning for your support. And today, alhamdulillah I'm in better condition and how great it felt to cuddle him without the father caution,hahahaha...

Reminding of Ghaziy being naughty during bathing time it's been a straight 3 nights shift that he desaturated and turned pale. Reason... He was angry that he need to wake up even though he's the last person to do so in the ward. I bet he had grown up and learned to show off his disapproval, nonetheless he can't afford to be angry as he'll be struggling to breath..hopefully, he learns that...hopefully...

Friday, October 21, 2011

Postdated update..

October 19th 2011

As I entered the ward ( oooh.. I sound like I work in hospital, hihihihi) there's a tall doctor ,I mean very very very super tall. He looks surprised and admitted that he thought I'm his boss. I used to come across him previously during his on call but never knew he could be sooooo talkative.

Even Ghaziy noted his existence as he even sing a song about rainy day when the first drop fell. It's kind of enjoying having him around once in a while but too much of talking causes sleepless to the little guy. The nurses reported that Ghaziy was only able to have his afternoon nap after the doctor left.

Due to the fact that my son was lack of afternoon nap, he looked restless during the evening. His eyes filled with sleepy tears conforming the theory that he needs early goodnight. Hence, be it, changed him to his pajama did his routine suction and his Ayah recited Quran less than a minute, he totally fell into deep sleep. He looks like a ball when he's asleep. His sexy pinky lips and blushed plump cheeks make my thought of having a very sick baby. In addition, my spirit is motivated that he'll might someday come home with me...PERHAPS...INSYAALLAH...

P/s: lately I have issues in uploading picture to my blog and I'm trying very hard to overcome it. Dear followers, appreciate for your patient.

Sunday, October 16, 2011

Another Day...

Ghaziy is currently showing positive stability. Though secretion amount has never been less, he learned to handle it with caution but maintaining his relax level. That is actually helped a lot. For the past 5 days, I managed to propped him up for at least 10 minutes a day giving him a relief on his shoulder due to prone positioning.

Why would my Ghaziy loves to be positioned prone?

That's a question I've been wondering. I never come across through any websites on SMA child's photos with prone position. I do wish I could have a person whom I could share her experience and knowledge in nursing and caring of SMA type 1 baby.

The doctors are helping a lot in making me understand the literal part of SMA natures. What causes the disorder and the bitterness of the prognosis but they unable to illustrate how the actual patient undergo their life. Perhaps it's something that the parent need to discover themselves.

As such, everyday shall be a challenge for me as Ghaziy will continuously teach me with new experience in becoming a great mother (I hope so..) to a special needs child.

Thursday, October 13, 2011

14th October 2011

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..

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.

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...