cuti panjang ...

jap lagi aku dah nak ke spital ... nurse dah tepon kata ammar dah boleh turun wad jap lagi ... so maknanya aku akan bercuti panjang dan berumah tangga di spital ... tak tau berapa lama aku cuti ... yg penting confirm aku sambut puasa kat spital ...uwaaa ..waaa ... sedihnya ... sian anak2 aku kat umah.

mlm tadi, lepas off bipap mask ... baru nampak jelas muka tu

ni gambar pagi tadi ... dah nampak sihat sket

sunyi le blog aku ni ek .... apa pun mood aku happy hari ni sbb aku rasa ammar is getting better ... kalau tak takkan doc nak transfer di gi normal wad kan?

ingatkan dah ok ...

aku ingat ammar dah ok sket sbb pagi jumaat tu masa aku dtg nengok dia kat hdu tu doc kata kiv nak turun kat wad ... alih2 masa aku abis keje gi tgk dia ... dah pakai bipap mask lak .... nape lak ni?!??!

friday evening, still active tapi nmpak a bit weak

saturday masa aku dtg ammar tgh tido, tghri tu dia nmpak extra penat dari smlmnya ... aku risau tul, tak sedap ati sgt, suruh misi panggil doc ... pastu bila doc dtg check2 dia, doc ckp kat aku "mak, saya nak call doc icu dtg tgk baby ye ... dia nampak susah sgt bernafas, kita tgk dulu camne, kita bagi steroid dulu ... kalau dia tak respond to steroid & makin teruk maybe kena transfer icu, terpaksa guna ventilator bantu dia bernafas". aku dah rasa nk nangis pun ada bila dengar doc ckp camtu... memanglah ini bukan 1st time dia ke icu, tapi aku tetap rasa sedih & kesian pasal dia jadik balik cenggini ... tapi alhamdullillah, after an hour his condition stable .. so kiv icu, lega tul aku rasa masa tu.

ngah keletihan sgt tu, kalau bom meletop pun tak sedo agaknya

malam tu aku dtg lagi, dia still tido, puas aku cium2, belai2 ... tapi takde respond pun. ammar discharged last 3 weeks and within this 3 wks bdn dia naik 1.1 kg (tu kira rekod plg baik) ... skang kena puasa balik ... baru nak bulat anak aku tu.

still lena tido, doc kata mlm tadi nafasnya laju ... bila dah ok sket baru dia boleh tido

smlm masa aku dtg dia tido lagi, dah 2 hari aku dtg dia tido je ... letih agaknya. aku panggil2 nama dia pun dia tak respond, sedih tu aku masa tu .... tiba2 aku rindu sgt kat dia walaupun masa tu ada dpn mata.

kalau perasan kat tumit dia tu bekas jarum, 3 kali sehari amik darah nak tgk glucose level dia sbb ari sabtu tu tiba2 glucose level dia drop mendadak ...

pagi tadi masa aku dtg, ammar baru lepas nangis ... doc baru set line baru utk dia, line yg buat smlm dah bengkak .... sian dia... bengkak2 mata nangis. tapi pagi ni dia dah bukak mata, pandang je muka aku ... sebak aku tgk condition dia gitu ... kata doc he is more stable today and looking at his condition now, doc plans to off the bipap mask... insyaallah.

emergency konon .. tapi lembab

pkl 2.30 pagi tadi aku gi emergency coz suddenly ammar cam breathless sket, bila baring tak berhenti batuk sampai nafas dia jadi laju tapi takdelah dia turn blue lagi. sblm pegi tu aku pack baju aku suma siap2 ... yg mana dan je amik sbb aku tau sgt mesti kena admit.

baik betul dia, amik neb tak nangis pun, cool je .. siap pegang lagi

tapi .. bila misi start buat suction ... melalak tak hengat!!!

padahal petang tu abis keje aku dah bwk gi kk2, amik neb pastu buat suction, looks better lepas tu ... ntahlah ... benda dah nak jadi kot.

sampai je kat emergency dorang suruh aku masuk dlm nk buat observation bagai (amik heart rate, spo2 segala) ... yg buat aku sakit ati ...dah tgk anak aku pucat biru, di pasangnya lak heater ... kasi anak aku naik hangin dah tu nangis sampai tercungap2 tak cukup nafas ... lak tu dorang boleh buat dek je. geram betul aku!!

bila aku tanya tak nak bg oksigen dulu ke? ... misi tu ckp "kita kena check dulu brp spo2 dia mak" ... logic lah dol!!! kalau dah tercungap2 ... pucat biru tu ... ko rasa cam oksigen dia cukup ke???!!? kurang2 bg le 2-3 liter dulu, pastu kalau spo2 tak mencapai 100% naikkan lagi. takkan ko nak tunggu anak aku dah sejuk kaku baru ko nak bagi oksigen!!!

kat dlm emergency, ngah melalak tak hengat!!

kalau tak mengenangkan kes anak aku mmg kat situ, dah lama aku bwk gi hospital lain. ni bukan 1st time, boleh dikatakan tiap2 kali gini... hasilnya tiap2 kali dorang lembab cam siput ngantuk gini anak aku ditransferkan dari ward terus ke hdu takpun icu. padahal masa mula2 sampai emergency ok lagi, takdelah sampai pucat biru. aku paham pkl 2.30 tu sepatutnya time tido tapi dah nama ko keje kat emergency ... kes2 cmni patutnya lebih prihatin, cekap & pantas... ni tak dok terhegeh2 pastu ada hati lak nk borak2 ngan aku time2 kritikal camtu.

dah tu doc on call kat situ mati2 suruh aku pakaikan baju ammar, katanya ammar sejuk ... kejadahnya!! apa ko buta tak nampak anak aku berpeluh2 meleleh cam lari maraton 5 km?? boleh lak dia tanya aku soalan yg aku rasa tak patut ditanya oleh sorang doc..malas aku nak bagitau apa soalan tu ... sakit ati, nyampah ...pagi2 jumaat ni la korang nak buat aku sakit ati!!!

nasib baik ada sorang yg prihatin, datang siap membebel ngan kwn dia sbb biarkan patient camtu, siap amik kan bantal pastu hadang kiri kanan katil ngan selimut takut ammar jatuh dari katil (katil baby takde, so terpaksa guna katil adult), sgt prihatin pastu beria2 nakkan ammar selesa ... katanya "baby2 camni kalau tak selesa dorang menangis, nanti lain lak jadinya, kita takmo buat dorang stress ... dah lah tak sihat".

bagus betul dia, sejuk sket ati aku ngan this sweet lady, nak bercerita pun senang ngan org yg pandai buat keje camni. semoga allah balas budi baik this lady... issh!! terlupa lak aku nak amik nama dia.

dah sampai wad, ngah keletihan, tunggu2 bantuan oksigen tak sampai2 ... agaknya misi2 sedap membuta ke hapa?!??

tak lama pastu ambulan sampai, kitaorg pun dihantar ke paedriatik unit, ward yg aktif malam tadi kk^. sampai ke kk^ takde org kat kaunter ... aaiikk?? mana pegi suma misi?? hazab aku yg kedua lak bermula ...malas le aku nk reveal .. tapi yg pastinya, sama lebih kurang cam kat emergency gak ... tak prihatin & lembab.

dah dpt oksigen ... punyalah dia peluk mask tu ... sian dia

kat hdu .. ngah feeling2 nk tido .. ngantuk tapi sebok nengok org

so skang ni ammar kat hdu (under icu gak, small scale, only for semi kritikal)... hopefully by a day or two, ammar boleh transfer out to normal ward ... ward kk2. Insyaallah.

Adam

Anak aku yg sorang ni nama penuhnya Muhammad Adam Danial, nama panggilan Adam. Dia ni kalau disuruh bergambar elok2 ya aamat susah sgt ... hazab betul kalau aku nak suruh dia duduk diam pose2 hensem ... kecuali dtg mood baiknya.

Adam manja ngan aku, tapi aku tak boley langsung tegur dia ... ckp sket dah sentap ... kalau dah menyentap tu plak bukan senang nk pujuk ... ayat yg selalu dia ckp bila aku tegur dia ... "takpelah kalau mummy dah tak syg adam, senang biar adam pegi je mana2, biar je lah org lain amik adam ni"...(ngan harapan buat aku rasa bersalah)... walau camne pun, dia ttp carik aku kalau nk apa2 kecuali bila dia nk beli toy .... dia gi ke abah kalau nk toy ... (hubby aku lemah sket part2 camni, sian anak katanya).

Mulut cam bertih jagung ... tak berenti2 membebel ... tanya aku soalan mcm2 sampaikan kadang2 aku tak larat nak melayan ... contoh soalan yg aku malas nak layan ... "nape nenek beranak kan mummy, pastu mummy beranakkan adam?" ... errrk?!!?? ... motif ko tanya aku soalan camtuh???

Favourite dia superheroes & transformers ... dah tak terdaya nengok umah aku bersepah ngan toy dia... sampai ke bilik air pun ada toy dia ... tido pun bwk toy... gi school pun sorok2 bwk toy sbb takut aku marah.

Kalau costume superheroes tu ... dia ada batman, spiderman, ninja turtle & superman ... masa kostum ni muat lagi kat dia, gi mana2 nak pakai ... malu tul aku, dia penah gi carrefour midvalley pakai kostum spidey ... gi great eastern mall pakai batman, gi klcc pakai superman ... pastu confident jek, bila ada bdk2 lain gelakkan dia buat dek.

masa ni baju spidey basuh, tetap gak nak maintain jadi spiderman pakai mask je pun jadiklah ...

adam mmg sayang ngan firdaus (anak jiran mak aku) ... siap kasik pinjam kostum, kalau org lain jg harap dia nk bagi ...

Dari kecik mmg pantang jumpa air ... suka tul. Salah satu fav past time dia ialah swimming ... kalau dia mintak permission gi swimming then aku kata ok, gumbira sesangat ... tapi kalau aku kata tak boleh ... abis cam nk terbalik umah aku dia ngamuk sambil membebel.

Satu lagi, tak boleh biarkan camera atau hp aku bersepah ... kalau tak siaplah kan ... tak pasal2 dia jadi photographer tak bertauliah .. kalau boleh suma gambo nak di amik nya.

gambo ngah feeling sensorang ....

gambo2 ni dia amik sendiri, byk lagi sbnrnya ... tak kuasa nk upload

Kalay di tanya dia ngaku dah ada gelfren .. nama alice .. alice ni sbnrnya ank kwn aku, kitaorg duduk condo yg sama tinggal lagi umah alice ni opposite block aku, dorang pantang jumpa ... berkepit je, maybe sbb dari dlm perut aku ngan ibu alice ni pun slalu buat benda sama2 ... dlm satu hari tu mesti kena makan sama2, ke sana sini kitaorg gi mkn sama.

Bkn takat tu je, gi gynae pun yg sama ... sampaikan bersalin pun kitaorg selang 12 jam je ... ibu alice keluar labour room, aku lak masuk labour room tu ... sian dr tu, lepas attend ibu alice tak sempat rehat kena attend aku lak ... so end up, sepanjang kat spital tu share bilik yg sama gak ... adam pun panggil ibu alice ibu, alice plak panggil aku mummy ... ha!!! elok sgtlah tu ... sesuwai!

pandai lak amik gambo sendiri .. berdua lak tu!

Aku sbnrnya buat entry ni sbb rindu kat dia .. baru mlm tadi mak aku dtg amik dia bwk balik klang ... hubby aku ckp "kwn gado u dah takde, aman lah sket idup u, kalau tak bila dia nyakat u naik angin".

Tulah pasal .. kalau ada sakit ati, geram kadang2 rasa nak cekik pun ada ... tapi bila dia blk umah nenek dia ... idup aku jadi sunyi, umah pun sunyi sbb dah takde suara dia menjerit, melalak (nangis), menyanyi dan merajuk ... aku lak takde menjerit (aku jerit setelah usaha cara diplomasi tidak dilayan) suruh dia gi mandi, suruh duduk diam ... jgn panjat2, suruh dia benti nangis (bila aku marah dia), suruh jgn nyakat baby... mcm2 jgn lagi le aku bagi kat dia.

Pasal tu kata org, bila ada dpn mata kita kena hargai setiap detik bersama, jgn bila dah jauh, dah takde baru nak dikenang2 ... kan?

Words of comfort ... courage ...

hi ... nama saya Muhammad Ammar Danish

This is a true story which i copied from Persatuan Sindrom Down Malaysia (PSDM) book. Everytime aku rasa down or bersedih mengenangkan keadaan ammar, aku bukak balik buku ni so that i realize that ada orang lain yg senasib ngan aku malah ujian mereka lebih hebat.

The story goes like this ...

I went through nine months of good pregnancy and had no problems at all but I went through a bad labour for 13 hours. As I was pushed to the labour room, I could still hear my other children saying, "Mummy, bring us home a beautiful baby boy".

It was like a bombshell when the doctor annouced that I had a Down Syndrome baby. I knew nothing about DS nor anything related to it. I went down on my knee to ask for help not knowing that there's no cure for Down Syndrom. When I got to know that it can't be cured I went through a very bad depression.

When my baby was only few days old, the doctors pronounced him as deaf, dumb and blind and that he will not survive through the week. I sought psychiatrist help for a year for my depression and emotional turmoil and kept asking my self "why me?".

Then I came across a book titled "why me?". The book was about a parent with two special children. It sent a message to me saying that God had chosen me to be this baby's mother. After reading that, I was determined to pull myself out of depression and do the best for my son Johan Rahmat.

(as i am typing this story, I couldnt stop myself from crying, tears came down like pouring rain)

I looked around for centers for physically and mentally impaired children. I attended many local and international conferences and invested in tapes and books which I share with the centers.

Johan was born with a hole in the heart and now has leukemia. Johan also suffers from another syndrome which is called the "Ectropian" syndrome because he was born with short eyelids and needs plasters on his eyes whenever he sleeps. I have to keep him by my side whenever I take him out.

The doctors said that he will go blind in his teens. I was told by the doctors to love Johan day by day and not to wait for tomorrow. Johan sleeps with one hand ties to me so that I'll be aware if he has a heart attack.

I want parents to realise that it is not the end of the world if their child has Down Syndrome. What is important is to have a support system which will let you know that you are not alone.

Johan is a fighter and he is also my best friend. He is a very caring and lovable child. He knows when I'm sad or happy. He can sense my feelings.

Bringing up a special child like Johan involves hardship and requires patience and love. Since having Johan, I have become very involved in the parents' support group and my home is always open to all mothers of child with Down Syndrome who needs emotional support and counselling.

Johan will also play his part by helping parents understand Down Syndrome child is and to give them hope for the future. I hope to go on doing this and I feel it is part of my life.

To all mums and dads, please welcome this child into your family and also give him or her lots of love. Remember, there is always light at the end of the tunnel waiting for you. God has sent you this wonderful baby for you to care for and there is always a reason to it. By having this child you will always be contented with life, be reminded to do good deeds and be close to God.

I believe we are very special people, and that is why God sent upon us this special child.

by Johari and Laila

Ammar in his 1st week

I really understand how Pn. Laila felt, I really do. For those who didnt know, Ammar is a down syndrome baby and was born with heart & gut problems. He has been diagnosed with lots of things since birth, but mostly concerning his lungs.

3 months old with life support in ICU

Lucky thing is his heart condition called (PDA) is not in failure but still need to be monitor closely with regular follow up & check up.

5 months old, still in ICU

Immediately after birth, Ammar was on life support for 30 days, in his first week, the doctor told us that he has 50/50 chance of life as at that time his liver swollen and his blood flows the opposite way (suppose A-B, instead B-A) plus the body has started rejecting the food & medication.

7 months old, in HDU again due to recurrent pneumonia



8 months old, in ICU after 'fundoplication' surgery

But Allah is great, Ammar beats all the obstacles and doctors prediction many times, he is a fighter too same as Johan ....

9 months, happy & free at home .. makin bulat!!!

If I were to write about Ammar's journey today then it will be the longest entry I have ever written. Maybe when I have time I'll write a book about Ammar's journey & my life as a mother to a wonderful and special baby.... just maybe.

to make a woman happy ...

just wanna share an email received from a friend ... wat do u think??

To make a woman happy.....

A man only needs to be:
1. A friend
2. A companion
3. A lover
4. A brother
5. A father
6. A master
7. A chef
8. An electrician
9. A carpenter
10. A plumber
11. A mechanic
12. A decorator
13. A stylist
14 A psychologist
15. A pest exterminator
16. A psychiatrist
17. A healer
18. A good listener
19. An organizer
20. A good father
21. Very clean
22. Sympathetic
23. Athletic
24. Warm
25. Attentive
26. Gallant
27. Intelligent
28. Funny
29. Creative
30. Tender
31. Strong
32. Understanding
33. Tolerant
34. Prudent
35. Ambitious
36. Capable
37. Courageous
38. Determined
39. True
40. Dependable
41. Passionate

WITHOUT FORGETTING TO:

42. Give her compliments regularly
43. Love shopping
44. be honest
45. be very rich
46. Not stress her out 4
47. Not look at other girls

AND AT THE SAME TIME, YOU MUST ALSO:

48. Give her lots of attention, but expect little yourself
49. Give her lots of time, especially time for herself
50. Give her lots of space, never worrying about where she goes

IT IS VERY IMPORTANT:

51. Never to forget: * Birthdays * Anniversaries * Arrangements she makes

&

HOW TO MAKE A MAN HAPPY:

52. Leave him alone

me ... as a mother ...

it has been months since i last logged into my blog. the truth is, i didnt hv much time 4 myself since ammar discharged frm the hospital, i dont sleep well, only 3-4 hrs a day as ammar is still on 3 hourly feeding at home, i’m just sooo bz doing things and chores, it's like never ending story when it comes 2 house chores.

it's really a big challenge 2 be a working mother esp when you hv a 9 mths old baby n a 6 yrs old boy at home. i also hv 2 teenage girls n 12 yrs old boy too but these days u cant really rely on them, kids nowadays are so forgetful, they tend 2 forget what you told them 2 do ... the result??? my whole house is like a ship wrecked!

funny thing is, when i start nagging or yelling (not really yelling lah, just a bit of high pitch) automatically they remembered everything n knows what they should do! it's really different when i was about their age (14-15 yrs), i did my chores before my mum starts nagging at me.

now i realized that it's not easy 2 hv n 2 raise a teenager... i hv 2 currently living wth me! i dont really have much problem wth the younger ones but the eldest gave me headaches ... bear wth me, she gave n cause a lot of problems 2 us. i tried so hard 2 understand her, i really hv tried my best but it didnt work, i puzzled at times, i really wonder why is she still doing all the things that we (my husband n i) forbid her from doing. i'm tired of nagging her .. so i quit nagging n now on silent treatment (i only talk 2 her when the needs arise) n hope it'll work.

i was so dissapointed n sad when one day her best friend came 2 me n told me that this 'ungrateful girl' told her teachers and friends that she hated me since the day i married to his father.

yes, i am married to a divorcee wth 3 children. i met my darling hubby 8 years ago, at that time i worked as a secretary 2 his friend. never thought in my life that i would marry a divorcee, but that is what love do, love is something u cant predict ... and so, after a year of courting, we got engaged ... a year later officially became husband & wife.

anyway ... back 2 the story, the younger sister told me the same stories too. at the same time this 'ungrateful girl' creates her own version on how her father ignores them n send them 2 the shelter (this was when my hubby and his ex were officially divorced), and so she had 2 look after her younger sister n brother!!! my husband hurts so much when he heard about the news … who wouldn’t right??

she hated me so much, fine wth me, but why did she creates stories about her father, her flesh and blood, which is why i call her 'ungrateful girl'. she is sooo magnetic wth problematic friends ... ran away frm home, pregnant, school drop out etc. i really dont know what i should do 2 change her 2 be better person n appreciates life.

the latest, we caught her red handed when she skipped from school last week, we thought this 'ponteng sekolah syndrome' is new but actually she has been doing this since june ... not everyday but still ... she is not supposed to skip school!!! aarrgghh!! aku bengang giler!! don’t know what i should do wth this girl … sigh..

but whatever lah, kadang2 malas nak piker byk2, got lots of things in mind … i hv to set my priorities and other important things, for example, 4 other kids to be taken care of esp ammar.

of course all this is a very …really tiring process for me, physically and mentally, i guess this is what it takes to raise a children tak kisah brp ramai anak kita ada, the challenge is still there.

as a human being, aku tak lepas dari buat silap but i’ll try my best and do whatever it takes to raise them to be somebody (ayat poyonya ialah saya akan berusaha sedaya upaya saya utk mendidik anak2 saya menjadi org yg berguna).