Thursday, February 28, 2013

Dinner & Such

The theme for year 2013 was Black & Purple.
Hence, everyone was purplish on 1st February 2013.
It was held in hmmmm..apa nama restaurant itu..lupa daaaa
Italian resto la..sebelah je dengan arabic resto yg agak glamer kat situ and tak jauh dari Baitulmal Kg Pandan.

Tuesday, February 26, 2013

our disabled child not worth it?

On 23rd february 2013, the annual Children's Party is being held again at Thean Hau temple, robinson height at Seputeh area. This year, the main sponsors are Persatuan Hainan WP & Selangor and China Press.

What usually happen is those associations which takes care of orphans or from children's home or diabled children will be celebrated. There are food, entertainment like clowns, singing, magic show and donation giving ceremony. Yang best, ang pow giving time. a lot leyyy...this year, Oya got RM207. thanks u uncles and aunties.:-)

Oya and Nabil. Besties

Seronok naik bas

Nyanyi karaoke..

ang pow siap ada nombor leyyy

the food and etc etc

Siap jalan2 kat Bukit Gasing lagi kejap...sebab balik tuh jam amat...adeh..

tapi disebalik kegembiraan, surat hari neh membuat aku hanya tersenyum tawar.
Kami masih bersyukur. cuma kadang2 bila terasa hak kita dipermainkan, rasa macam nak jadik srikandi la plak. haiyaaaaaaarkkk.

This letter is from SCASFT (Oya's school) to JKM. One of the agendas is to state that the welfare grant is taken out from the maintenance grant. Mind you, SCASFT is NGO. We only pay RM50 per annum and the rest depends on the donations drive.

Transport subsidy.
If if i send Oya to school EVERYDAY, i will only get RM120.00. Our own insurance some more whereas normal school children on school bus are covered by insurance automatically.
Don;t get me wrong. I am happy for the insurance-bus thingy but is our disabled child not worth it?
Special schools are not available everywhere like the national schools. Even if they have special education classes, they are limited and with conditions like must be able to walk or operate their own wheelchair.

and 19 years old tak dapat allowance? we are talking about OKU okay...kalau yang bo;leh bekerja they will tapi yang tak boleh?

What happens to Children like Oya? Don't she and her friends whom are not able to walk (yet) and needs assistance deserve education? so sampai bila2 dorang mcm tuh la? tak layak masuk main stream?

In centres like SCASFT, i do not need to be there (i can;t afford to quit work also). They have class assistants who will take care of the children (tukar pampers, bagi makan, etc). That's why yang lebih 18 tahun pun masih bersekolah kat sini sebab ada latihan vokasional dsb.

But these centres need fund to operate.

So, without the government grant, how?
Belum lagi aku cakap pasal monthly allowance. Belanja for OKU kid is double from normal kid.
So imagine what you are earning now and the spending on your child. Now, at least kali dua lorrr..

boleh kau tanggung?
alhamdulillah. so far rezeki Oya dan Adam mencukupi. aku amat bersyukur.
Cuma aku kesian kat kawan2 yang mana rezeki belum mencukupi.

Tapi kami bukan peminta sedekah. Kami akan cuba memenuhi keperluan anak syurga kami walau kadang2 berkorban.

Anyway, selamat berbelanja dengan duit BRIM anda.

Monday, February 25, 2013

Story of Dalili Sofiya

It's been ....6 years.
She is now 6 years old. Time flies so fast.

I am happy, blessed and having wonderful times having her in our life.
But i can't deny the fact the yes, i am worried for her.

What happened, really? we had to answer similar questions everytime new people see her and know that she still cannot talk and walk like a 6-years-old.

Here it is:
My pregnancy went smoothly until the birthing process. Adam, the elder brother, was born healthy via c-sect after nearly 24 hours of labour pain. 
Sofiya, on the other hand, had me in intense labour pain for 4 hours after my water was broken by the nurse at 12midnight. The pain before the breaking thing was 3am we tried for normal delivery and after few tries i asked for C-Sect. I felt out of energy.
My request was denied with "sabar, beranak memang sakit". 
Vacuum was introduced and failed. at 6am, i was on the on the way to surgery room and i could hear the surgeon said "it's too late".
Hence, on Feb 25th 2007, Sofiya was born via c-sect and was in NICU 2 weeks after that.
I was told that her chance was only 50/50 and if the 3rd drug didn't work on her, nothing will.

Alhamdulillah. It worked and her epilepsy or sawan ceased until today.
Except, she was out of oxygen during birthing process and 2 years later, she was pronounced as Cerebral Palsy. She had Global Developmental Delay where even at 1 year old, she couldn't even sit on her own yet.
There you go. I think i got it all covered. 

Saturday, February 23, 2013

Sample Itinerary: Bandung-Jakarta & Conversion table

Based on my last trip on Dec 6th~12th 2012, this was our itinerary.
To have this kind of itinerary, either you should know how-to-get-around or just hire a supir.
habis cerita.

This was the conversion table i used and distribute to trip members to facilitate with shopping.
Of course, this was based on general exchange rate. kalau nak accurate payah la.

Monday, February 18, 2013

Cycle#1 - Post Chemo

Post chemo Day#1 - Feb 16th. Saturday
Alhamdulillah. I felt just fine. It maybe because i kept hitting the pills as prescribed.
But i do notice that the red colour in my urine has reduced tremendously since Day 0. Water my friend..water intake...
I also notice that my appetite is ..normal? i do eat a lot even i have some minor tasteless feel on my tonque.

Post chemo Day#2 - Feb 17th. Sunday
Alhamdulillah. I felt just fine. But i started feeling nauseating a bit. Much more similar to ..morning sickness for during pregnancies. But i do munch on snacks and limau kasturi to keep it at bay.
But my appetite is still huge. I hit the mee goreng mamak while savouring for nasi and kari.
Nope. i dont feel guilty. I will take care of my future menu but indulging once in a while won't hurt  right?
This i get from cancer patients. If we are already losing thr appetite, why should we limit our choices?
But with moderation, of course.

So, after sending my mom to LCCT, we went to Bagan Lalang and hit the seafood resto. ahaks.

Post chemo Day#3 - Feb 18th. Monday
Alhamdulillah. I felt just fine. I'm still on MC and planning for my next rafting on March 2nd.
Still having the "morning sickness" and i am watching out for the steady decreasing of my white blood count starting from today. It should pick up again on the day 10th.
I can imagine having going to work tomorrow with masks.

Hopefully all is getting better. If this is what i am going to go through for the next 6 months, then Redhalahkanlah Hati ku Ya Allah, tinggikanlah keikhlasanku Ya Allah.
Hanya padaMu aku berserah.

Saturday, February 16, 2013

My First Chemo *Cycle#1 - Day 0

There it was. My first chemo on Feb 15th in PPUM @ UH Petaling Jaya.

The day started (it's going to be routine anyway) with taking in Kytril pill @ 1 tablet which must be taken orally at least 1 hour before the IV is being set-up. It's supposed to help prevent the vomiting effect.

Chemotherapy Daycare room in PPUM consists of kerusi empuk yang boleh recline tuh.
so, quite comfy la.
I was ready with materials and all. Tak sempat baca pun. Berborak dengan neighbour lagi ado..

Thursday, February 14, 2013

Semoga semuanya baik2 saja

Insyaallah. Someone told me today, maybe i didn't believe in traditional treatment.
I said no, even if i were to 200% believe that traditional treatment work wonders and can heal me, it is only as "wasilah" or "asbab".

Everything is up to Allah SWT.

It's not because i didn't believe in traditional treatment. aku serahkan segala2nya pada Allah.
Aku berusaha dapatkan herba itu, ubat ini, tapi kalau chemotheraphy pun took 6 months, traditional pun sama jugak.
oh well, recent herbal treatment yang aku buat pun (per my previous post : HERE) tak menampakkan apa2 kesan pada mata kasar.

papehal pun, entry neh untuk menceritakan bagaimana journey aku bermula:

Thursday, February 7, 2013

About a week before

Happy Chinese New Year my dear friends.
and happy holidays to the rest.
4 straight days. wow-weee...we gonna have a tough time coming back to work..think wednesday morning..

but for me? it's gonna be a week leave. My chemo will start on Feb 13th @ wednesday.
usually MCs will be given for 2-3 days.habih MC den nanti.

Ada yang bertanya. how the trip back to Sabah? how was the traditional treatments?

well,i can't expect miracles unless with Allah's permission.
During my leave back in my hometown, i did visit several ustaz and traditional practitioner/healer.
All actually require long-term treatments which will take months.
so, finding one in Sabah is out of the question since i will be going back to KL soon anyway.

So, following a friend's invitation, i gave another a try. Another traditional healer using herbs.
After a bottle of plain-tasting herbal drink, i feel there is no effect. Actually, i also have no idea where to measure and what to look for even though i am now in stage 2 which involves another herb.
This one is claimed to wonders and he has few testimonies. I wont say there's no effect, but again, i will may only feel the effect if my tumour has reduced to half.

Afterall, all the above including are only asbab or wasilah as only Allah can heal.

but no worries, i am still thinking positive. Negative result won't hinder me as faith is keeping me up as always.

now, i am looking forward to my chemo sessions. this should be fun. I am gonna test my strength - bodily and spiritually. Insyaallah,Everything's gonna be ok.


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