Tuesday, June 29, 2010

Imad

lately nampak imad weak sgt bila nak bangun...
susah payah and bersungguh dia nak bangun...
ada satu malam tuh.. tgh2 dia nak bgn dari carpet.. dia terjatuh balik, tersembam atas karpet.. kesian sgt i tgk dia... sib baik tak apa2... n he just walk away mcm tu aje.. mcm benda tu dah biasa kat dia... selalunya if dia terjatuh ker apa mesti dia datang to me n merengek...

jgn la sesiapa tertolak dia.. confirm ngan easily dia terjatuh... n dia semakin kurus... sedih la tgk dia.. but i have to show my happy face to him.. if not mesti dia lagi sedih kan...

mcm mana la ibu nak sekuat imad ye? semoga ALLAH permudahkan perjalanan hidup kita ye imad, kuatkan semangat dan hubungan kita... amin....

Monday, June 28, 2010

Zoo visit with MRDS and KIWANIS

Last saturday, we went to the zoo with MRDS and Kiwanis group.
Only 7 families join the visit and sadly none of them having DMD child.
tapi tak pela.. at least i get to know other family as well, met little adam yg having PWS (Prader Willi Syndrome), sha with CP, hui yee with several disabilities, one chinese boy which i can't recall his name yg mengalami tulang rapuh, his age is 8 but lagi kecik dari imad, mardiana with affan disease (mind the spelling) and yg 2 lagi, Indian families which their doter and boy dlm stroller n wheelchair I tak sempat nak beramah mesra...

Met Juliana, Anna and Kathlin from MRDS, also Noel, Jessy and Clarence from Kiwanis, actually ada lagi from Kiwanis but i can't get their names....
All of them are so friendly, and each of them has been assigned to one family each. Kathlin has been assigned to walk with us, muda lagi orangnya, keje part time kat MRDS and now tgh proceed with her master majoring in Genetic. She said compare to other deseases, DMD tak ler berapa rare sgt, cuma orang selalu kept things within themselves aje, maklumla its all about genetic (keturunan)... masa dia ckp nih.. i was like.. pap!!!! cam something yg sedarkan i, yeah its genetic, n saya pulak lebih2 war2kan tak tentu hala, cerita sana sini, did not really care that slowly this thing will hurt us, esp for my doters.... masa jalan2 kat zoo tuh takde la rasa apa2 but when i keep on thinking bila balik rumah... i kesian sgt2 kat anak2 i....
apa la yg aku dah buat nih.....am i doing the right thing now?? should i or shouldn't i publish about this DMD story, is it okay for me to blog it out or should i stop... now it hurts me... really hurts me... huhu... tak tau nak ckp mcm mana.. but what i feel now...mcm2 rasa ada, sebak, putus asa, menyesal, nak menangis pun ada....

ok back to zoo story, so far dorang impressed coz imad still can walk.. alhamdulilah.. we only stop kat one pit stop utk rehat when imad complaint sakit kaki.. the rest dia okay aje, mula2 tu mmg nak bawak stroller tapi mr. ayah pulak malas...
i suka tgk adam... this little boy buat hal dia aje, he is 2 1/2 yrs old and having PWS... dia anak bongsu dlm 3 adik beradik.. tak silap penyakit dia nih, takde rasa kenyang.. so he will eat n eat n eat.. hehe.. kenala mak n ayah dia control... itu sbb masa kat zoo tuh, dia asik la mengunyah.. hehe.. buat he is smart...

sha CP... nothing more that she can do... tapi dia suka rabbit... bila tgk rabbit.. kuat dia gelak... n i can see her mother sayang sgt2 kat dia, layan dia lembut2 aje, dari appearance dia pun leh agak.. dgn ribbonnya, dgn kasut n stokinnya... langit n bumi dengan saya yg kasar nih...

mardiana affan (i still can't get the correct spelling of the disease), tapi according to kathlin penyakit mardiana nih tulang dia akan memanjang and ada heart problem..

overall i tgk budak2 tu semua enjoy dengan lawatan ke zoo nih.. according to noel (ex president kiwanis USJ), mmg kiwanis usj adopted mrds.. so after nih Insya allah there will be a lot more activities and they invite me to join their meeting.. tapi tu la kat USJ la pulak...
tapi byk jgk info yg i dapat, n happy sbb get to know others.

we end the lawatan at 1pm.. lunch kat rest kat dlm zoo tuh, n ada prize giving... masa nih masing2 dah letih... sapa nak continue.. dorang continue la... like us, kena balik sbb my neighbour buat kenduri kawin anak dia... dpn rumah aje...

imad was soo happy tapi dia tak ler bersosial dgn budak2 tuh, sbb dia pun mcm takut2... cuma he makes friends with adam... anak2 suka sgt ngan adam...

nanti senang2 i upload la gambo ke zoo tu ye.... itu pun kalau ada mood... m now in my mood swing... swing swang swung........

Thursday, June 24, 2010

Visit to the zoo

Insya allah this coming saturday, 27/6 imad ada visit to the zoo.. anjuran kiwanis and persatuan penyakit jarang jumpa (ppjjm) or malaysia rare disease society (mrds)

Actually this is the first time for me to meet up with those people... before this ada AGM, tapi saya tak dapat pergi, kena balik kampung... but i just put my name in for the visit sebagai pemula cara untuk saya mengenali dengan lebih dekat orang2 Kiwanis and PPJJ...

segan jugak tapi demi imad...join aje lah.. ikutkan dah bape kali kami ke zoo, tapi untuk mengenali orang2 yang senasib dengan lebih rapat... maka langkah ini perlu... actually on that day, jiran selang sebuah rumah ada kenduri kawin... tak pe la kot datang lambat sikit... nanti mlm sebelum tu kena pi jumpa la tuan rumah...

its free and imad can bring along his sibling.. so imad will be accompany by me, kakak and hanis.... we have to wear red shirt... ooooo i like red... hehe

cite pasal red pulak, semalam saya gagahkan diri drive ke Jln TAR... cari kain utk baju raya puteri2 saya... nak buat dua pasang and of course.. mesti ada red.. haha...(thn nih ibunya cuba utk tidak berbaju raya, hmm boleh percaya ker???)

balik tuh tunjuk kat kakak..she loves it so much... n sadly imad tanya... 'ibu mana abang punya'... kenala explain.. abang punya nanti ibu beli nak dekat raya... sbb abang punya ibu beli yg dah siap aje...
dia diam aje....
mr. ayah balik lambat lately.. so the kids went to bed without story telling by mr. ayah.....kalau tgk luaran, they don't mind actually.. tapi i know they miss mr. ayah... coz pagi tadi... bangun2 tido aje, imad terus gi kat tingkap bilik dia n tgk keluar... n said to me... 'ibu... ayah dah pegi keje eh... ayah tak kejut abang pun'... huhuhu.. masa nih bergenang airmata saya... rindu betul dia pada ayah dia....
masa call mr. ayah n told him pun, dah meleleh airmata saya.. huhu... mcm mana la kalau mr. ayah kena outstation lama2 lagi... huhuhu... jenuh la saya nak explain....

Wednesday, June 23, 2010

Imad's drawing


Masa appointment with Neuro tuh... imad did a drawing to show to the Dr....
and surprisingly.. drawing dia dah byk improved... dulu dia lukis orang, exactly macam orang lidi... cuma ada rambut.. now orang lidi dia dah makan weightgain... hahahaha dah badan segiempat dah... dah ada rambut pacak, dah ada telinga.. smiling ear to ear, dah pakai kasut... and ada pusat juge... hehehehe

Bila ibu dan anak2 bertudung syria



hehehe promo sket...

ini masa bersiap2 mau ke majlis kesyukuran my SIL... before that kena la posing2 dulu... kami semua berjubah... me n my doters... n imad juge...
kadang2 kesian kat imad.. bila kami bergaya2.. dia tgk aje.. n he wanna join.. nak baju the same kaler and if kami pakai baju kurung, dia pun nak berbaju melayu... hehehe...
and photo with their cousins tuh... sume tuh baju pinjam imad n syera which turun to hanis.. n now to yaya.. hahaha... mmg riuh rendah rumah... walapun penat tapi 44ronok....haha

Kakak's bestday

Kakak's simple bestday cake
everybody pun sibuk nak potong cake

Kakak got what she wish for... andddd i have to buy something for imad n hanis...
kalau tak merajuk....

Imad got his Beemers..3 ok... kecik pun jadila kan bang... dah beso esok...abang beli beemer yg besar okay!!!

This little girl sibuk ngan doddle pad dia...
Just a simple celebration for kakak... we just bought KFC and birthday cake... n nenek cooked tomyam campur n rendang udang yg yummy as that is her favourite dish....apa yang penting kakak happy....

My little helper


See what my little helper did!!!

She helps me to set the table... saya tak pernah ajar n saya sendiri pun tak buat gitu.. hehehehehehe.... n yang best tuh dia puji diri sendiri.. hehehehe...


hanis: ibu... hanis nak tolong ibu..

ibu: okay hanis amik pinggan n sudu ok.. kita makan mee...

hanis: ok...

later......

ibu: wahhhh cantiknya anak ibu buat....

hanis: cantik kan ibu hanis buat... mcm pengantin...

ibu: hahahahahahahaha.....

Friday, June 18, 2010

Neuro Appointment

Wednesday 16, imad ada appointment with neuro specialist...
just us, me n imad... mr. ayah busy bee... we arrived HUKM at 7.50.. hehehe punya la awal.. appt stated at 9.00a.m...

cari parking yg dekat n yg tak yah naik stairs... kesian kat imad kalau kena naik stairs...
terus gi register, n gi breakfast.... we sat beside one chinese couple nih... rasanya mak n anak.. maknya nampak lemah aje... rasanya nak gi physiotherapy kot... sbb she kept on asking me, mana exercise? mana exercise... hehehe...we had nasi lemak... (lucky sbb punya la lama tunggu turn), yg couple nih... anaknya gi cari makanan n left his mom alone... so i just kept an eye on her... sbb atas meja dia ada gelas yg dah guna, cleaner tak angkat2 lagi... tup2 dia gi tuang air milo dia dlm gelas tuh... cepat2 la saya bgn n letak gelas tu jauh2... n said 'auntie takmo amik gelas itu ye'... n gave her, another new glass... she kept on pouring in each of the glasses... bila anak dia sampai.. i pun explain la... he thank me for doing that... asik2 la ckp.. 'thank you yaa...thank you... n he gave imad RM10... dia kata 'money for school'... hehe
rezeki imad.. tapi yg sebenarnya... saya juga dlm keadaan begitu... mengharapkan bantuan orang sekiranya saya terpaksa tinggalkan imad sekejap utk ke toilet, amik makanan dan bayar.. sbb kena la cop tempat dulu.. sbb tempat limited... tapi kalau ketoilet selalunya saya akan usung jugak imad... payahla pulak tinggal lama2 kan.. n tak nampak di mata...

okay back to the appointment...
we got to see dr. wong... sbb prof ong kebizian melampau.. itu pun setelah menunggu hampir 2 jam... huhu... seperti biasa.. mesti kena buat test for scoring... and the score still as the same as in december... n yg sedeynya berat dia turun... turun dari berat in december... just 16.23kg...
after dah settle sume tuh... dr. still asking me about the steroid... and i said yes... he explained the pro n cons.. and said that imad will be taking a very low dose of steroid..

after all the explanation and discussion.. i showed him the paper cutting on the DMD patients in Besut... The couple had 3 children confirmed DMD aged between 18 to 15 and looked so weak... and the sad thing is... most probably the other son also might have the same disease....
i asked the dr.. 'will imad also look like that in future?' he just starred at me and said, 'i know u have done your best for your son, and i know how it feel, i can't said i understand becoz i'm not in your shoe.. but please pray hard and dont lose hope'!!! huhuhuhu... miracle can happen.. he said again...

but he did mention to me, tangan n kaki imad akan mengecil... cuma badan masih sama, because of no of dystrophin protein.. sbb tu jadi mcm tuh, i tanya lagi.. 'i tgk dia mcm tak boleh bend lutut dia bila nak turun tangga.. is that the reason why he can't properly use the stairs... because he can't bend his leg...
dr. explain kata yang muscle pinggul dia tak kuat, itu yg kita nampak dia tak boleh bend, padahal he's trying hard to bend the leg... kita berjalan menggunakan otot pinggul.. jadi bila otot lemah.. mcm mana nak berjalan...
so now i paham la... imad is getting weaker and weaker.. huhu...

sedih sgt rasanya bila tgk dia mcm tuh... but he's good and tough boy... semoga ALLAH permudahkan perjalanan hidup kita ye bang... ibu sayang abang.....

Tuesday, June 15, 2010

Duchenne Muscular Dystrophy

Semalam saya terbaca di Utusan Malaysia...
Pasangan Pasrah 3 anak menghidap penyakit Misteri.....

I read on and on... and suddenly my tears came down, mula2 hanya airmata... lama2 dah jadi teresak2...luckily it was only me in the room.... imad and mr. ayah were at the living room watching worldcup....

I'm touched, I'm sad, I'm depress, I'm scared and I am very symphaty with the family.... its not one but three and coming to four... how they handle it, how they manage ONLY ALLAH yang tahu....tapi yang sedihnya kenapa la penyakit nih dipanggil penyakit misteri wahai penulis... ini bukan penyakit misteri... dah ramai pun pesakitnya.. cumanya semua jadi kes terpencil, kes terpinggir.. mcm keluarga di Besut tuh...

and being me... rasa tak sampai hati dan tak sanggup nak tengok imad dalam keadaan begitu... haii ya ALLAH.. tabahkan la hati dan perasaan hamba2 MU ini....kuatkanla semangat kami, permudahkanlah perjalanan hidup kami dan tetapkan lah iman kami... amin.....

after dah sok sek2 sorang2 dalam bilik... i went out and get mr. ayah... i showed him... he also read on and on... and after that he just kept quiet... i asked him.... 'bang.... nanti imad jadi mcm tu ker?'.... he answered me 'nak buat mcm mana bu.. tapi Insya ALLAH kita usaha la sebaik mungkin'....

Deep inside me... i pray hard that imad takkan jadi mcm tuh... kalau pun dia menderita dgn DMD nih, i tak sanggup nak tgk dia jadi tak upaya, dengan badan hanya tinggal kulit dan tulang, eventho sympthom kaki dan tgn mengecil tuh dah nampak.... huhuhu

Insya ALLAH imad.. ibu will do the best for you with all the kederat yang ibu ada, itu janji ibu...

Monday, June 14, 2010

Home Alone

Kakak dan Hanis ada di kampung... actually abang pun nak tinggal but because ada neuro appointment this coming wednesday maka, abang terpaksa ikut kami balik ke KL... sowi anak2.. ibu tak boleh cuti panjang lagi... masih lagi dlm 'probation period' katanya...

sunyi pulak rumah bila dorang takde... abang dah komplen start2 masuk keta lagi... hehehe.. kesian abang....

Friday, June 11, 2010

HAPPY BIRTHDAY KAKAK

today is kakak's birthday....
bangun pagi tadi, dia tgk jek ibu dress up....
dia tanya...
kakak : ibu.. tak pegi keje ker?
ibu : nak pegi la nih, kenapa?
kakak: takde apa....
ibu : oh ye... happy birthday kakak, semoga kakak menjadi anak yg solehah dan berjaya didunia dan juga di akhirat...
kakak : hehehehehe senyum panjangg...

she wish for monopoly city... mmg dah saya belikan pun... harap2 dia suka...
today there will be a small celebration for her... nanti eh kakak... ibu ada duit lebih, kita buat besar2an mcm dulu....

luv u,
ibu.....

Tuesday, June 1, 2010

Imad and measles

masa my parents were here, imad demam... tapi tak tinggi... just dedar2 aje... bagi ubat, hilang la... tapi dia takde selera... even masa saturday nite yg saya buat makan2 for both families (my family and in laws) pun dia tak berapa selera nak makan... sib baik la my bro bwk pizza... sooo dia makan la jugak sikit pizza tuh...
steambot saya mmg dia tak pandang la kann... hehe... w/pun mcm2 bahan yg saya sediakan...
so on sunday tuh.. baru la nampak bintik2 merah kuar kat badan dia, gatal2 lak tuh... mr. ayah tolong amikkan daun mambu or bambu ntah la... mandikan dia, minum air kelapa and mlm tuh jugak bwk dia ke klinik.. amik calamine lotion.. dapat la mc dua hari....
kesian imad... mmg miang agaknya badan dia tuh.. mmg nampak tak selesa betul dia.... even appointment dia today pun saya kena cancelkan... hopefully he will recover soon....

GET WELL SOON ABANG!!!!

SHE's my bff

my parents were here from last thursday nite till sunday...makanya saya jadi chef straight for 3 days in a row... hehehe.. sgt syiok ooo dpt masak...

on saturday my parents gi attend konvo adik bongsu kat uitm... and they brought syera along with them.. so left me with 3 active kids... imad, hanis and aqil (my nephew)...
pagi tuh saya sibuk dok menyediakan bahan2 untuk steambot malam nanti...mana dengan nak masak lunch nya... and with no helper... masa nih baru la teringat kat syera...
memang selama nih dia la yang banyak bantu tengokkan adik2 dia..mmg kadang saya boleh lepas tangan laa... terharu sangat rasanya...
memang sangat2 terasa.. sbb mana dengan imad, mana dengan hanis... n kerenah aqil lagi...

thanks kakak for being a very very good daughter to me, ibu sayang kakak sangat2 and kakaklah pelengkap hidup ibu... kakak kawan sejati ibu, kakak sentiasa ada while i'm down, kakak a good shopping companion, kakak jugak a good listener... thanks kakak for being there always for me... i love u till bits... muah muah muahhhssss....