Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Sunday, June 30, 2013


My parental leave is ending soon..!! 2 more months, then will be back full time.. Arghh camner nih.. 7 bulan dah berlalu tak terasa pun..

Z masih belum mencapai target asal mama, but he has gone through soo much over the last couple of months. If it wasnt the surgery, he must has meet our goal. Kita hanya mampu merancang, and I am still very proud of what he has achieved to date.

The thing is, I dont want to stop here. I want to continue working on my goal - to help Z achieve his full potential. Going back to work full time will limit my time with him. Less appointment with the theraphies. More stressfull in time management i think.

I wish I can continue working part time. But honestly I dont think it will work that well. Sekarang pun nama jer part time (with part pay) but I still continue doing 90% of my full time job. Stress it is, unfair of course. Have to work extra hour everyday so I could cramp my 5 days work into 3 days. At the same time got less money. But i keep reminding myself, that the extra 2 days I have to spend with Z is priceless. So keep my mouth shut. If I really want a part time job, I should just look for another post. Because this just isnt working...

My sweet darling who means the world to me

My big boss D has been assigned a specific position at the moment (thats why i've been 'mistreated' by her replacement) and i find it very difficult to discuss my need with the new manager..

Z will start pre-school in september (the same time i am back full time). I only enrolled him part time pre school i.e. 2 or 3 half days per week. Pre school kat giraffe jer. So lepas school masuk balik toddler room. Pre school ada SNA. Lega sikit di situ. Its free as well. So walaupun Z will spend 5 days in giraffe, it doesnt cost us that much actually.

If i can continue part timer, that even more cost effective. Masalahnya mana nak cari part time post di zaman2 kemelesetan ekonomi nih.. Plus i dont want to let go my permanent status. Susah ooi nak dapat permanent kat sini. Sigh..

So my next wishes is.. Career break. Due to economy climate, College put an insentif - 3 years career break for those who wishes (boleh bagi peluang pada orang2 lain yang menganggur). Lepas 3 tahun, u r guaranteed boleh balik keje within the same post!. Tapi papa kata dia masih blom mampu.. Huahuahua.. Unless if we want to move outside city - ke drogheda to be exact. Pekan kecik. Masalahnya camne pulak dengan Z's appointmets and therapies suma2 tu. sekolah lagi. boleh la transfer, but the best always in city anyway..

Hmmm entahla.. Mama rasa mama go for full time tengok macam mana. Kalau dah rasa unmanageable sangat tu, terpaksa la buat pilihan drastic. 2 bulan lagi. Semoga Z mendapat yang terbaik.. Thats all I care about.
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Wednesday, June 26, 2013


Harini ada protest besar2an seluruh Ireland under Special Needs Parent Association untuk membantah keputusan kerajaan nak mengurangkan LAGI budget for resource hours and also SNA (special needs assistant). Mama x join la, just kirimkan gambar jer..
Semenjak ekonomi merudum 3-4 tahun lepas, dah lebih separuh budget untuk golongan kurang upaya yang dah dipotong (actually lots other area pun kena potong jugak). Sebab tu lah bantahan di buat besar2an this time.

The good thing is, semalam minister dah announce yang diorang dah tarik balik keputusan untuk budget cut tu. But we decided to go ahead with the protest today sebab currment SNA n resource hour (time for one on one teacher-student) masih tidak mencukupi. So we'll see how it goes..

Actually future education for Z is the strongest reason why I want us to continue living here. Kalau ikutkan hati, dah lama dah nak balik Msia. There's so much different with the system here (although early intervention is quiet dissapointing) and i believe Z will got much more opportunity when he started formal education later. So there's to HOPE.

Z's typical weekly appointments

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Tuesday, June 25, 2013

Azmeer and TV3, please apologize to the Down Syndrome kids.

Please click on the icon above to sign this petition.

The Petition

The composer Azmeer and TV3 to apologize to the disabled community in general,especially Down's Syndrome person,child and parents on his comments towards a group performing in a TV3 Show,his comments are " like a buch Down's Syndrome idiots" or in Malay "budak-budak Tapaw ni bodoh-bodoh Down Syndrome" .
We want them make a public apologize thru press and TV statement.
Down Syndrome community have the right to be respected and cared about. We stand together in stating that our kids are educated, smart enough,able to do chores and have the ability manage themselves even though they are mentally challenge. We want the Malaysians to know that the education level has changed so much and we worked hard in taking care & made sure they are given the same chance like the others. We deserve some respect . Any impropriate act and words should be blame on the lack of self etiquette and manners.

Mama: Malaysian still far behind in term of sensitivity and awareness toward people with disabilities!

Sunday, June 23, 2013

First Salon Haircut


Sabtu mama bawak Z pegi gunting rambut - for the first time - di kedai. Mama nak dia gunting betul2 pendek, tapi org tu gunting pendek sikit jer.. Lebih kurang mama buat jer.. Rugi duit n air mata Z jaa.. Tak pe la, first experience for Z hehe.. 


Masa mula2 sampai tu, mama biarkan Z melayan ride peppa pig kat luar. Bila tiba giliran Z, baru masuk dalam. Masuk2 jer terus melalak.. Ada 4 seat (cars n plane) then setiap seat ada tv kat depan. Diorang kasik belon n pasang peppa pig, bila Z macam dh calm down sikit, baru helen start. 

Of course la dia melalak semula lepas tu.. Mama suruh helen carry on jer, he wont stop crying. Walaupun Z melalak, at least dia tak meronta2. cuma tangan tu kadang2 libas sana sini jugak la.. Hehe mesti pressure jer aunty helen tu gunting rambut Z. Senget2. Memang tak berpuas hati. Tapi pendek la jugak.. 

Actually sejak seminggu ni mama perasan rambut Z banyak gugur. Memula tu mama tak kisah sangat, maybe biasa jer kot ada musim2 rambut gugur (ada ke?). 

Tapi last 3-4 days ni macam bertambah teruk jer.. Kalau bangun tido tu mesti ada kat bantal n tilam. Dalam bath tub pun. Kalah rambut mama.. Kalau sikat pun mesti ada jer kat sikat. Sebelum nih x pernah nampak pulak.. Dekat jaket pun ada.. 

Something is not right here, so macam biasa i started googling.. Masih belum habis membaca lagi. But hair lost happen to about 10% in DS. 

Mama dah start risau nih.. Hopefully its not alopecia areata (AA). Harap2nya hanyalah sebab irritatation kat scalp. Sebab Z memang slalu garuk2 kepala, especially lepas mandi. Allergic to something or maybe just heat. Sekarang nih summer kan, panas sikit. Dia memang selalu ada masalah kulit time2 summer..


Hopefully rambut dah pendek nih, gatal2 dan ketidakselesaan Z akan berkurangan.. Tapi kalau still gugur jugak lepas nih, kenalah jumpa doctor..

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Thursday, June 20, 2013

Birthday Papa

(standard la, minggu lepas punya cerita..hihihi)

14-Jun tu hari Jumaat, papa ada dinner & presentation with his team, so tak dapat ler nk celebrate on that day. We plan to have dinner over the weekends instead. But khamis tu, mama buat ala2 surprise sikit for papa, tapau some food for dinner. Papa oncall, balik lambat pukul 9 lebih baru sampai, sempat la mama siap2. Takde lah apa sangat pun, but he was surprised of course and the 3 of us had a wonderful dinner at our comfort place :)

Weekend konon nak dinner kat luar, tetiba Ipad pulak rosak. Hmm.. x de maknanya ler.. confirm Z akan melalak punya. Ipad jer yang dapat mententeramkan Z for an hour or so while we dine. So cancel la makan2 luar. Jalan2 pusing town jer.. oh Z ada Gymboree class on Saturday. Nanti lah mama citer bab tu.

Isnin papa off siang sebab oncall malamnya, mama pulak memang half day sebab nak kena g ambik spec (yg sepatutnya hadiah birthday untuk diri sendiri March lepas, tapi baru sekarang sempat buat huhu..). Papa complaint, birthday dia, mama yang dapat hadiah? bukan memang macamtu ke sepatutnya? hehehe.. Hadiah papa kena postpone jap. Hujung bulan ni InsyaAllah..

Lepas settle semua we went to cinema. Tengok Man of Steel. Pergh, this is the first time in 8 months for mama & papa keluar berdating BERDUA sahaja.. hehehe.. Jangan marah yer Z. Z kat skolah ler time tu..  (Maybe lepas nih boleh buat lagi la.. :p)


Tuesday, June 11, 2013

2 tahun 10 bulan

Dah dekat 3 tahun dah anak mama.. dah lama mama rasa tak update pasal development Z.
Berat: 10.9kg (latest)
Tinggi: 89cm (April)

In term of skills, mama rasa in the last 2-3 months Z has improve a lot. Sekarang nih sedang galak memanjat. semua tempat dia nak memanjat. Cruising pun makin jauh. InsyaAllah, harapnya tak lama lagi Z boleh berjalan la.. Haritu physio Emer datang and buat full asessment. Dia cakap in term of physical, Z memang tak ada masalah (except the low tone of course). His legs are fine, his posture is perfect, his spine also good. Mama risau la takut dia ada flat feet ke, curvy spine ke.. because all those could affect his walking ability. Alhamdulillah everything is ok. Cuma dia jer yang tak nak berjalan lagi. Manja. He has no interest to explore around, that's why dia tak nak berjalan.

Speech pulak, Z dah banyak babbling sekarang nih. Sejak awal tahun ni memang bertambah tambah bising mulutnya. Tapi still tak de words keluar. Sebut mama pun belum. But he likes to sing (not so much in tune) to his favorite song. Twinkle-twinkle little star.. Dora.. Head & Shoulder.. Old McDonald.. etc.. kalau those songs keluar kat TV or mama nyanyi, mesti Z akan turut serta; dalam bahasa dan irama dia la.. but I noticed the sound he makes is always the same. So memang dia menyanyi la..

Anxiety pun dah improve a lot. Z dah tak menangis di sekolah. Pagi mama hantar (sejak hari pertama ke sekolah after surgery) dah takde drama air mata. Cikgu pun dah tak perlu nak dukung Z. Biar jer dia merayap merata kelas.Dengan home teacher, Mairead pun Z dah ok, walaupun di rumah. Paling aneh 2 minggu lepas appointment dengan Kerri SLT. Sebelum ni Z kalau nampak Kerri macam nampak hantu. Infact, appointment dengan Kerri la the first time when I noticed Z has strangers anxiety. Ingat lagi tahun lepas, dia punya melalak.. mama pun nak tumpang sekaki. Since then, jumpa jer Kerri, memang tak payah pujuk la, meraung jer kejanya. But 2 minggu lepas, for the first time, at home pulak tu, Z tak melalak!!! bukan tu aje, siap ajak Kerry main bola lagi. Bila Kerry nak balik, baru dia melalak - tak bagi Kerry balik sebab nak main bola. AMAZING! 
Di sekolah
Masa jumpa Maeve (Psych) re austism (nanti la mama update pasal nih), dia tanya do you think his anxiety level now is reducing, because he is really recovering or because he just get use to those people? That's make me realised.. Actually bila jumpa orang baru (eg: ENT) Z still melalak. strangers menyapa di tengah jalan pun Z tak layan. Pegi tempat baru pun Z masih melalak. So he still has anxiety, but the level might have lowered and the reason his life is much more calmer is because he just know or get use to a lot of people now. His circle of trust is expanding.. Tak per la, at least ada improvement kan... :)

I now focusing on his hearing. Walaupun his ABR test comes out normal (20-30 db), but mama tak rasa Z dengar dengan sempurna. Dah 2 kali jumpa ENT. The first one, tak dapat buat apa pun sebab Z melalak and he got bad congestion as well. Last week jumpa lagi, dah boleh la test sikit. But he still not cooperate much. Plus his ear canal is too narrow, doctor tu tak dapat nak access betul2. But she thinks he has fluid in his middle ear. But he never had any ear infection. Dia cakap tak semestinya kalau ada fluid, kena infection. Banyak jer kids yang not even realised they had fluid in their ear. He probably had those since he was little, he already get used to that and the sound surrounding. No wonder he is not able to say any words. Papa pun jadi 'wawa'. because that's how he heard it. 

Masa first time jumpa ENT dulu (early May) dia suggest letak olive oil untuk clear the wax. Mama dah try banyak kali prior to 2nd appointment. Memang takde apa langsung yang keluar. Dia cakap maybe fluid tu dah keras dah, thats why tak boleh cair.. So she has refer us to ENT surgeon. Z might need grommet/tube on his ear.
the appointment will be in Augus - kebetulan Z dah dapat appointment untuk his tonsil (re sleep problem), boleh sekali harung.. 

Sedih jugak mama rasa sebenarnya.. 'If' his hearing was sorted earlier, he probably wont have much problem with speech now.. Hearing test normally done when they were 3 months old. tapi Z dah pindah randah.. Pastu susah giler nak masuk health system kat sini.. Everything is delayed. ABR test tu pun buat with private masa balik bercuti di malaysia last year. Kesian Z.. Dia boleh la dengar, cuma bende yang dia dengar tu lain jer la.. That's why he is confused and wont be able to pronounce it.

Tak per la, better late than never.. I dont think I can wait until August. August nanti examination jer dulu. kalau betul, ntah bila pulak surgery nya (some people on DS ireland forum say they have to wait 3-6 months just to get that tiny grommet surgery..) I read from few other forum, some people recommend EARDOC, katanya boleh membantu open up the midle ear and loosen up the wax/fluid. So mama dah oder semalam. Hopefully membantu and tak perlukan surgery. Tapi mama rasa ear wax Z tu dah keras batu dah kot.. tak sure la berkesan ke dak.. tengok ler macam mana nanti.. yang penting kita berusaha yer dak?

Sunday, June 9, 2013

Bank Holiday Weekend

Weekend lepas punya cerita.. Sabtu tu mama keluar shopping sorang, best! Kalau keluar dgn Z jangan harap ler mama nak boleh belek barang2, mesti Z akan meragam..
Anak bapak betul lah! 

Ahad pulak buat makan2 di rumah. Pot luck jer, mama x sempat ler nak masak semua.. Biasalah kalau gathering, menu traditional menjadi pilihan. Anti meri mengidam sambal petai, so mama buat sambal tumis udang n taugeh ikan masin. Anti meri plak buat kari ayam yang mabeles, with sambal belacan n kacang botol. Anti rini buat bubur pulut hitam. Anti chai n ankel bazak bawak kek (mereka busy hehe) n anti jai buat air teh tarik beliau lagi busy - oncall that day pastu siap kena operate orang lagi. Tapi bab makan takleh tinggal, habis theater terus lari sini n makan. Pastu baru pegi spital balik utk consultation. Boleh gitu? Hahahah.. Nasib baik rumah kami dekat spital..

Anyway had a blastful day with close friends. Siap ada gig duet anti chai ankel bazak lagi..
Z buat apa? Asalkan ada dora n ipad he was fine. Kakak caroline pun hantu dora, duduk ler diorang berdua depan tv tu.. Cuma kakak caroline kena duk jauh sikit. Z kedekut, x kasik dekat tv. Sabar jer laa..

Isnin pulak we went to the zoo. Dah 10 tahun mama kat sini, baru nk pegi melawat zoo. Padehal dekat jer. Pegi dah tgh hari, baru tengok 3-4 jenis binatang Z dah tido.. Memula mama ingat nak stop n makan2 ke while Z tido, tapi restaurant suma pack. So mama n papa continue jalan2 jer laa.. Dah nak sampai hujung baru Z bangun.. Lagipun Z mcm tak paham sangat pun lagi.. Binatang2 tu semua duduk jauh2, Z tak perasan pun.. Kalau yg duduk betul2 depan mata baru dia perasan.. Tak pe la, next time kita datang lagi yer..

So thats how our long weekend goes :)

- Posted using BlogPress from my iPhone


Thursday, June 6, 2013


asyik entry serabut jer la mama nih.. but seriously lately banyak sangat perkara yang membuatkan mama STRESS!

I am sorry my sweetheart.. I probably have scared you today. I promise to be a stronger person for you. But there are times I feel soo guilty not being able to provide the best for you. There could be millions of excuses from other people not to give their best interest in you, but I always end up blaming myself. I really want you to have the best, if you feel otherwise, please forgive me. One thing for sure, I love you so much and I will continue to fight for you. With you.

O Allah.. Please give me strength and guidance..