Paed, Dietitian & OT

Last week ada (6-monthly) appointment with Dr Murnaghan. We dont have that much concern except for his last vomitting episode and his growth.

Winter Coat 2 tahun lepas pun masih boleh pakai (tangan je pendek skit)

Issue growth ni timbul bila mama keluarkan baju2 winter Z last year and they still fit him nicely! Macam x naik langsung.. Seluar jer la yg pendek sikit, tu pun ada few yg masih boleh pakai (save bajet..)

His latest measurement

Height 91.5cm

Weight 11.35kg

Naik la jugak sebenarnya, but not so much. In term of height, he is still in 90th percentile of Ds growth chart (meaning that if we take 100 DS childs at his age, only 10 of them are taller than him) and if compared to normal growth chart, he is average - which quite true since he is the same height with his classmate. But his weight is the biggest concern. He is only in 25th percentile! 

Because of that, Dr Murnaghan terus panggil Val (Dietitian) for consultation. After brief discussion, she still happy with Z's meals quality n quantity. The only problem is his milk. 

Sekarang dia memang x minum langsung di sekolah (thats also the reason for constipation). He only take 6oz in the morning n another 6oz in the evening. Mama memang bekalkan susu kat sekolah, tapi diorang kata Z tak nak. Mama rasa 2 sebab Z tak nak, 
1. Diorang bagi dia minum while sitting uncomfortably on the chair 
2. They dont really care..

So, Dr Murnaghan n Val suruh mama ckp kat cikgu diorang nak Z habiskan jugak at least 1 bottle of milk in school. (6oz of milk ada 400+ calories, for kids as little as Z, thats quite significant!)

On another note, Z also hv follow up visit by his OT, Sinead. Last jumpa raya haji haritu. Mama takde la this time, Sinead pegi sekolah Z jer. But she did provide me summary. 

She brought in 'Heathfield Chair' kerusi khas utk Z. Kerusi ni will provide good support for his posture. Hopefully will help during his feeding time too. 

This tiny chair cost over £500!! (luckily we have it free on rental allowance)

Then dia ada jugak bagi few suggestion on activities n toys that are appropriate for Z's stage. Most of those stacking toys memang dah ada 3-4 jenis dah pun (kena carik balik dlm stor la sbb beli, then Z x main pun..). Tapi toys yg jenis pop up tak penah beli lagi. Nanti lah mama survey..

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Mama sgt berpuas hati dgn Sinead nih. Worth the wait! OT kat Ireland nih mmg sangat susah nak dapat. We have to wait for over 2 years!! Mama dh try carik private in between, memang x de yg kat area Dublin City. Kena travel jauh, susah la utk mama yg x de kereta (or even Irish license) nih :(. Anyway, we supposed to start OT hujung thn lepas, tapi Z kan sakit time tu.. We only managed to officially begin therapy summer haritu jer. Once a week in the beginning sbb Sinead agak risau dgn 'kelewatan' Z. Mmg nampak bnyk perubahan since.. Alhamdulillah :)

*Update (13/11/2013): Harini Mairead (Home Teacher merangkap main contact for Z's welfare) datang ke sekolah Z untuk berbincang dengan manager pasal his milk intake. She also bring in the recommendation from Dietitian and Paed. Hopefully lepas nih pihak sekolah tak akan mengelat lagi bab2 susu Z nih.. :)

Rabun

Enjoy while waiting for the appointment :)

Mama tak tahu nak update ape nih.. Tengah lunch hour. Mama x bawak bekal pun harini, nasik dah habis malas nak masak. Sempat grab mini cakes 2 ketul jer tadi.. (sekarang dah jarang keluar lunch, sep duit hihihih).

Anyhoo, Isnin haritu appointment mata dengan Dr Emer. Mama off ler pagi tu. Z was in a very good mood. Walaupun agak lama menunggu (setengah jam jer pun), he was absolutely fine. Memula baca buku, then pegi playroom, then mama sogok iphone. Masa jumpa Dr tu of course la dia melalak kan.. apatah lagi bila doctor masukkan ubat titis dalam mata then suluh2 plak mata dia..

Dr Emer kata mata Z dah rabun short sighted - rabun jauh :(. Tapi dia kata for now belum perlu pakai spec lagi, but she will have to see him more frequently. Memandangkan mama dan papa pun dedua rabun, kami memang dah expect Z pun akan rabun. It just happen earlier than expected jer..

Nasib baik belum kena pakai spec. Kalau kena, mama pun tatau nk buat camner. Z sangat sensitif around his face. Nak sentuh muka pun susah. sejuk2 ni sepatutnya kena pakaikan topi, jangan harap ler.. memang dia akan buang jer. Mama selalu jer belikan sunglasses untuk Z. Ala yang murah2 tu jer, pun sama lah. dia campak jer. Macam mana lah nak pakaikan spec nanti yer? 

Rimas jer bila difikirkan. Sigh.. hopefully by the time Z kena pakai spec tu dia dah boleh faham the reason behind it. 

Now mama nak kena bagi makan makanan yang boleh membantu mata Z. Tapi mama baru baca carrot (orange food) tak elok bagi banyak2 untuk autism. Especially when they have issue with thyroid as well. The worst thing is, Z tetiap hari makan orange food masa duduk dengan bibik dulu (dia kan mana pernah nak buat variasi makanan Z, asal Z suka sudah ler katanya..) So pagi Z akan makan baked butternut squash (pumpkin) with apple, lunch and dinner plak mesti ada sweet potato. itu jer laa tetiap hari. patut la Z posses autism sign. Well at least that could be 1 of the reason for it la..

badan Z tak dapat nak convert carotene to retinol that is useful for his body. disebabkan tak boleh pakai, beta-carotene tu akan berlegar dalam badan end up jadi toxin jer --> toxin is 1 of the cause for autism!!!!. the best way is to treat thyroid first. Tapi sebelum ni dr kata tak perlu sebab thyroid Z slightly above normal jer (TSH 6++). Tapi mama baca even TSH above 4 pun dah sepatutnya kena treat.. (normal is 2-4) sigh.. camner nih. Mama baru jer decide to slowly reduce pengambilan orange food dalam diet Z, now issue with rabun pulak. but the thing is, kalau mama bagi Z makan carrot banyak2 pun tak guna jugak, sebab badan Z memang tak boleh nak convert it to vit A pun.

berbalik kepada issue rabun, mama rasa sebab thyroid la Z rabun. Dia tak dapat enough vit A. Kan? So he need thyroxine (ubat thyroid). Thyroid does effect a lot of things actually. Mama pun tak faham kenapa doctor tak nak kasik ubat. Nampak gayanya mama kena jugak la carik vit A supplement for Z khas utntuk mata. Susah btol nak challange doctor when we are not a doctor ourself. Kan bagus kalau mama nih doctor. Papa? tak pe laahh.. alasan bukan bidang dia. x pernah pun nak buat extra study to understand the situation. Betullah orang kata mama always knows best! or at least mama just want to give the best for Z..

Hmm.. dah mengarut2 dah.. ok lah, baik mama clock in and start buat keje. nanti bleh balik awal sikit.. esok Jumaat, dah cuti :)

Unpaid Leave (Parental Leave)

Mama officially on 2 days perweek unpaid parental leave from January till August this year. Last month mama off guna annual leave jer.. tinggal lagi 8 hari jer annual leave mama untuk tahun nih. dah x boleh cuti2 lagi dah huhuhu.. (and even worst, uncertified medical leave pun dah dipotong. Dulu boleh ambik uncert MC up to 7 days per year. So kalau apa2 hal tu, tepon jer office cakap sakit hihihi.. tapi this year government dah reduced to 7 days for 2 years . kena la g clinic kalau nk mc huhuhu)

Mama keje 3 days per week and so far still x de replacement untuk those 2 days yet. maksudnya mama kena siapkan 5 hari keje in 3 days only. Memang busy x bernafas jadiknya.. nak p toilet pun x sempat.. pada mulanya bos mama kata dia nak advertise temporary position utk 6 month contract using the money they saved from my unpaid leave. Tapi tak dengar apa2 pun lagi nih.. pening jugak mama jadiknya @.@. nasib baiklah sekarang nih bukan peak season..

Dah la urusan harian pun masih terkial2. Ok tu ok lah, Cuma mama rasa masih blom mencapai target. Banyak plan mama x sempat dilaksanakan lagi. Z plak day by day semakin manja. Asik nk berkepit jer dgn mama. And to make the matter worst, since last week I got lower back pain. First 3 days tu mmg menangis2 nak bangun tido. Atok kata silap urat, kalau kat malaysia kena p berurut lah.. Papa kata biasa jer tu, makan pain killer jer.. seminggu dua ok lah. tapi mmg sakit sangat. Macam dekat2 nak beranak dulu pun ada. Sekarang pun masih sakit, but dah ok sikit.. sigh, usia semakin meningkat ni macam2 la penyakit kan.. so I am a bit frustrated sebab pergerakan terutamanya pagi2 sangat lah slow.. akibatnya semua benda jadi lambat (kalau keluar p shopping ok aje?). tapi mmg mama baca, the more u move n stretch the better it will be. Sebab tu lah bangun pagi sakit sangat kot, sebab tido kan x banyak bergerak.. bila dah petang tu its getting better.

Last Wednesday @ St Michael's House - Appointment with Speech & Language

Anyhoo, mama sangat bersyukur sebab dapat ambik unpaid leave nih. At least those extra 2 days ada la jugak manfaatnya untuk Z. So far mama arranged all Z’s appointment on Wednesday. Home Teaching 2 minggu sekali, speech therapy 3 mgu sekali and physio pun 3 mgu sekali. Boleh la alternate. Pastu mama dah jumpa private therapies centre dekat area rumah (block sebelah jer). Mama plan nk book speech therapy dulu. Tengok ok ke tak.. physio tu nanti2 la, sebab mama agak berpuas hati dgn Z’s new physio. Cuma speech jer yg tak berapa best. Lagipun speech therapy is necessary to help Z fight those autism sign. So, kita cuba la yer..

Kat rumah pun mama akan spend at least 1 hour utk focus on Z’s therapy. So far we are working on his gross motor n hand grasp and coordination. Pastu mama dah mempelbagaikan teksture makanan Z. Z dah boleh makan lumpy food. but still very soft la.. Banyak lagi mama nak kena study sebenarnya, tapi serious x sempat bukak internet (ni pun update kat opis time lunch). Boleh la nk online sekejap2 tu.. tapi kalau mende2 ilmiah ni bukan boleh main tengok2 gitu jer.. kena la betul2 mengkaji dan memahami. Kadang2 tu baru baca 4-5 paragraph, Z dah menjerit2.. memang tak boleh concentrate. Kalau mama x layan dia, nanti mulalah dia buat all those stimming behavior. Memang x leh lepa. Malam pulak pukul 10 baru Z tido. Konon2 mama akan ‘study’ time tu la, tapi slalunya x sampai setengah jam pun, mama dah pengsan.. mama kena usaha bagi Z tido awal sikit lah..

Alhamdulillah, mama tengok banyak juga perubahan Z the past 6 weeks. InsyaAllah semoga Z terus menerus menunjukkan perkembangan positif.. Aminnn..

Meet New Psychologist

Last week mama dapat call dari Maeve, the new Psychologist for St Michaels's House. She just want to get to know us and continue what ever we are doing with the previous psychologist - Karyn.

So semalam, mama ambik half day off and bawak Z ke SMH. Actually, we last met Karyn in July. Lots of action being taken eversince to overcome Z's anxiety. We've been to playgroup (Gymboree) and also starting slowly with creche. And for me, Z has shown massive improvement. So, that's what I've been telling Maeve. Unfortunately she doesnt have details on Z's history sebab katanya Karyn cuma leave a note to follow up with Z aje.. Tak kasik apa2 details pun.. Mama lah kena cerita dari mula hingga akhir apa yg kami dah buat so far..

Tengah tunggu bas

According to her observation, Z doesnt really shown any INTENSE anxiety pun, so she does praised mama for what we have done so far :D. Sebabnya semalam Z mmg tak nangis pun masa jumpa Maeve. Mama kasik dia main phone. So diam jer lah dia kat sebelah. Mama borak2 n ketawa2 pun dia buat tak layan jer.. Towards the end tu, ada la jugak dia start buat perangai, but biasa lah tu kata Maeve, toddler mana boleh duduk diam..

But mama still raised concern about Z's anxiety. It definitely does not go away 100% yet. In fact, mama rasa cuma 50% jer kot. Sebab, memang lah Z dah ok with stangers surrounding, tapi kalau di approach, dia masih lagi akan melalak. Kat sekolah pun, Z ok aje dengan cikgu n classmate dia. Tapi bila bercampur dgn budak kelas lain, mesti dia melalak jugak.. So, mama sangat2 berharap we can also overcome those anxiety as well (of course mama sangat2 bersyukur dah with his current improvement, but he needs to slowly overcome those anxiety anyway..)

Maeve pun concern jugak sebenarnya, sebab nanti bila dah start home teaching or speech therapy (which is soon), he will need to deal with the therapist one-on-one basis anyway. Kalau dah dia asik melalak jer, how can we optimised the therapy session. Maeve kata dia akan jumpa Kerry (SLT) and Mairead (Home Teacher) and will advise them on how to deal with Z when he is having his anxiety. Apart from that, dia juga suggest mama panggil sorang kawan mama and try to make Z become close to them (mama ngadu, Z mesti melalak tiap kali kawan2 mama dtg rumah huhuhu). So dia suggest kalau one of my friend boleh spend some time to do something that he like, contohnya baca buku ke, main bola/ bubbles ke.. Then it could slowly build up his relationship with them and could also give some dimension for him to trust othe people. Problem is, aunty rini n aunty chai tu bukan reti main dengan budak2 hahahah! Camner la agaknya diorang nk try tackle Z kan.. hmm.. Aunty meri plak busy with caroline pun.. Haiyoo.. Uncle adrian pandai la main dgn budak2 nih.. Kena ajak uncle adrian n aunty rini ke rumah selalu lah camni..

Happy nak naik bas ^-^

We will meet Maeve again in 2-3 weeks time just before we go home, so we can have another plan for family in Malaysia.

InsyaAllah, with all the changes that happen in the past 2 months, mama percaya Z akan dapat overcome his anxiety one day... Amin..

Oh, mama juga cerita dekat Maeve (sambil bergenang2 air mata) how frustrated and heartbroken I was few weeks ago bila Z melalak2 di creche. Dia tanya, then what makes you continue him with the creche? Actually I was nearly giving up. But I keep telling myself that this is for his own good, we 'll try for one month and Alhamdulillah, after 1 month he does improved a lot. I am very proud of him really :D and of course to my own self :D..

Watery Eyes

Tadi ada appointment dgn dr emer burke (ophthal). Z mcm biasa lah, melalak2 bila sampai je kat SMH tu.. (tapi x de lah teruk sgt, masih boleh dipujuk..).

Anyway, bila jumpa jer dr emer, her first comment was " wow, he really has watery eyes!". Mama ckp la Z baru lps menangis jer, thats why lah merembes2..

Pada pendapat mama, mata Z dah improved sikit lah dari last time. But still berair2 jugak kadang2 tu..


Mata Z yang senantiasa 'jernih'. Will get worst kalau panas or berangin. Or if he watches too much tv/ipad..

Dr emer cadangkan utk buat drainage jer lah.. Terus dia ambik diary dia n tanya bila tarikh terdekat nk buat? Huh? Drpd pembacaan, mama tahulah procedure tu simple jer pun.. Tapi mama reluctant sikit sbb mama mcm tak prepared. I need to know more before putting Z under the 'knife'. Kalau papa ada maybe he'll know something, so mama ckp lah kami nk balik msia in 2 weeks time. Maybe later la kot will decide about it.. Plus he is getting better pun.. So, dr emer cakap wait for another 3 months n see how its goes then.. Fuuuhh! Seb baik -_-'

Lepas nih Z kena banyak makan carrot lah. Carrot mmg baik for eyes, and at the same time boleh bantu watery eyes jugak. InsyaAllah..


Kalau dah mcm gini melalaknya, bukan setakat watery, banjir dah pun..

Another Breakdown..

Harini ada playgroup kat SHM. Mama saje lah pegi awal, hopefully Z dapat tido lama sikit before start so kurang lah sikit crankynya.. kami sampai about 20 mins early. Just nice mama rasa. Mama biarkan jer Z tido dlm stroller (dia kan pantang keluar, mesti jer tido..). tengah mama dok baca2 magazine tu, datanglah manager baru for Home Teaching department (Cynthia) berkenalan. Borak dgn mama dah ler, ni dia siap g kejutkan Z yg tengah tido tu pulak.. dok geram2 n siap picit2 muka Z lagi.. bukak mata tengok ada org yg tak dikenali tgh tersengih depan muka dia.. apa lagiii.. terus lah meraung! Waaaaaa..!! that’s it. mama tahu dah, mesti takkan berhenti selagi tak balik nih..

Pastu si Cynthia tu dh rasa bersalah, dia cuba pujuk2 Z, lagi lah meraung mamat nih.. adoii.. mama kena lah dukung Z meronda satu SMH tu sampai dia senyap. Then mama try lah masuk n join the playgroup.. memula duduk jauh sikit, then semakin dekat.. lama2 boleh la jugak kami join few songs until Z started to scream again :(

takut mengganggu other parents n babies, mama pun keluar bawak Z jalan2 lagi.. x jugak reda tangisan Z. mama yg rasa nak nangis time tu. Stress!!Then Cynthia panggil mama, dia bawak mama jumpa psychologist (Karyn). Sembang2 kejap, dia ada appointment lepas tu, so we just book another appointment hujung bulan nih. hopefully mama akan dapat tip2 yg berguna utk mengatasi Strangers anxiety Z tu. Risau betul mama tengok condition Z. lagipun mama rasa mama pun kena jugak jumpa psych kot.. tadi masa Z melalak2 tadi tu, mama pun dah berasap2.. nak jugak marah Z tadik.. nasib baik lah masih waras n fikirkan Z masih kecik n bukan paham apa2 pun kalau mama marah.. ya Allah.. sabar lah mama ooii..

on the way balik..

tapi bila on the way balik, tengok Z tertido, sayu betul hati mama.. kesiaaann Z.. entah apa lah yg dirasainya waktu tu kan.. rasa bersalah pulak sebab put him in that situation.. maafkan mama sayang.. bukan mama sengaja nk takutkan Z.. tapi Z kenalah jugak bergaul dengan orang ramai. Selagi mama ada disisi Z, mama janji mama akan sentiasa protect Z. so, jangan lah macam ni yer sayang.. huhuhu..

LÀMH - to do or not?

mama baru dapat surat dari SMH utk mengikuti làmh course. kelas malam once a week for 2 months. mama agak keberatan sebenarnya nk join this class, although initially mama yg rajin2 p request for it.

Làmh tu maksudnya tangan in Irish (sebutannya mcm 'loff' gitu) adalah sign language yg specific utk early learning disabilities dekat ireland. most of the signs are based from ISL (Irish Sign Language) tapi a bit more simple.

mama memanglah nak belajar sikit2 sign language supaya boleh berkomunikasi dgn Z. tapi x de lah sampai nk pegi kelas for 2 months tu.. tu dah macam intensif signing class dah tu.. actually mama memang suka ajer pegi kelas tu.. banyak yg boleh dipelajari, bukan saja on the topic, tapi on other common things jugak.. cuma mama rasa mcm penat and takut tak berbaloi jer.. kalau sibuk pegi belajar tapi at the same time, x sempat nk practise dgn Z, ape gunanya kan? especially nk tinggalkan Z malam2 tu.. mmg lah seminggu sekali jer, tapi kalau dh ada kelas mama nk kena balik keja awal sikit.. bila balik awal, mama kena lah pulak ganti esoknya (dan lusanya).. dah jadik 2 malam mama x dapat bermesra dgn Z. seriously mama selalu jer sedih bila balik rumah tgk Z dah tido.. :(

lgpun, mama ada baca few articles, most of parent advised supaya focus more on communication itself rather than signing! sebab once diorang dh comfortable with sign language, diorang akan malas untuk bercakap secara vocal. nk communicate dgn org yg tahu sign language tu ok lah, tapi mcm mana plak nk communicate with the world? so, sebab tu lah mama agak keberatan nk focus on sign language nih....

alasan lainnya, april and may memang mama busy giler with work. seriously rasa mcm x sanggup nk kejar2 pegi kelas nih.. haih.. pastu june plak nak balik msia (insyaAllah), dah rugi 2 mgu di situ.. kalau diorang buat kelas ni 2-3 bulan lagi, mama rasa ok sikit kot.. takde lah terkejar2 macam sekarang.. tapi apahal pulak org tu nk buat kelas ikut mama punya timetable kan.. ramai lagi parent lain nk join the course..

but at the same time, it could be very useful utk encourage Z to communicate.. sigh...!

Drama

Pagi tadi ada follow-up assesment untuk SLT & Hanen technique. Agendanya diorang akan videotape mama dan Z berkomunikasi then diorang akan play back the record and make their comments. Mama juga kenalah apply teknik2 yang telah dipelajari during the course (baru 2 kelas jer pun..).

Budak mengantuk

Our appointment at 9.30am, kami sampai around 9.15 and Z mcm biasa lah, pantang berjalan mesti dia tidur, padehal baru jer pukul 9 lebih.. Sampai2 tu mama terus kejutkan Z, so masa masuk jumpa Kerri (SLT) tu, Z masih lagi terpisat2..

First few minutes tu ok lah lagi.. Kami mmg dh diberi homework untuk plan apa nk buat sepanjang sessi tu.. Mama bawak few toys dari rumah supaya Z tak boring and could act and play naturally. Bila dh start recording, still lagi dok sengih2 gelak2.. Lepas 5 minit camtu dia dah start cranky.. Asik hulur tangan mintak mama dukung aje.. End up dia start menangis. So mama pun dukung lah Z.

Tapi yg kelakar tu, bila dia pandang jer kamera, terus sengih2.. hahaha.. Tapi bila letak jer, menangis balik.. Then tengok balik kamera, sengih2 lentok2 semula.. Haih, drama king la pulak si Z nih.. Diorang pun mengekek2 gelak tgk budak perasan nih.

About 10-15 mins jugak lah kami 'berlakon'. Bila dah habis recording, diorang transfer to TV untuk tayangan. Sementara nk tunggu video being uploaded tu lah Z start mengamuk.. Memang melalak2.. Siap keras2 kan badan lagi. Especially bila si Kerri tu cuba pujuk. Lagi lah dia mengamuk! Selalu kalau dia nangis, mama dukung aje dia akan diam, tapi kali ni mmg tak.. Constant crying and screaming! Mama pun tatau nk buat apa.. Last2 mama bawak keluar bilik.. Ok lah sikit, but still menangis. Satu SMH tu boleh dengar dia melalak.. Lepas sorang, sorang staff datang bertanya kenapa. Bila masuk jer bilik tu balik, terus menjerit2 semula.. So Kerri ajak pegi play room. Masuk playroom pun sama lah.. Melalak2 .. Kerri pun dah serba salah jadiknya..

Last2 mama masukkan dlm stroller and bawak jalan2 kat luar.. Barulah diam.. Lama jugak mama mundar-mandir around SMH. Bila tengok dia dh ok, mama bawak masuk. Kat lobby, still ok.. Bila nampak jer muka Kerri, terus sambung melalak!! WAAaaaa..

Mama pun dah mcm nk nangis dah. Seriously, tak pernah lagi Z melalak sampai begitu sekali.. Mama kasik iphone tak nak, mama kasik bubbles pun tak nak.. End up mama terpaksa mintak excuse from Kerri. Memang tak boleh continue lagi dah.. Next time jer lah.. Sebab tengok gaya mmg takkan stop selagi mama tak bawak dia keluar..

So, itulah drama hari Selasa kami. Drama lain yg nak di shooting, drama lain pulak yg ditayangkan.. huhuhu.. Mama pun tak pasti mama ada apply ke tak Hanen masa main2 dgn Z tu.. Awal2 tu ada la kot.. Last2 tu rasanya lebih pada cubaan memujuk Z aje.. Jangan lah diorang pasang dalam kelas pulak nanti.. Maluuuuuu!

Masa on the way balik tu Z dah tertido.. Sampai rumah still sedu sedan x hilang lagi.. Adoiiiyaa anak mama.. Kesian dia.. Trauma agaknya.. huhuhu..

It Takes Two to Talk

Following Speech & Language Therapy assesment last month, mama dah mendaftarkan diri untuk mengikuti 9 weeks Hanen course. Kelas every Thursday night started from last Thursday.

First class ok lah.. Walaupun mama dah baca the Hanen books (x habis pun lagi.. ), its still far more useful to go to the class. Belajar dgn cikgu nih lagi berkesan.. Tak paham boleh jer tanya :)

Ada about 15 parents in the class. So far semua dtg bercouple. Since papa pun still on holiday, mama drag him to the class as well. Tapi from this week on, mama jadik single parent balik la.. huhuhu.. Actually mama lagi prefer kalau papa boleh join lagi, sebab at least kitorang boleh berdiskusi and attempt the practise on Z together. Tapi apa nak buat.. Papa keje jauh sgt.. Mmg tak sempat pun kalau dia nk balik for the course.. :(

Mama sangat berharap mama boleh start SLT nih as soon as possible. According to SMH, kalau nk tunggu diorang punya therapist, Z umur 2.5 thn baru boleh start. So, better mama start sikit2 with the Hanen Technique. Hopefully we are not too late..

Actually this course dah penuh pun.. tapi mama merayu jugak supaya mama boleh join. so they put me on waiting list.. last minit ade org yg cancelled so dapat lah mama join.. Alhamdulillah, dah rezeki kita namanya.. :)

so, now marilah kita buat homework yer Z ;)

1st Physio in 2012

Semalam appointment dgn Paula. Walaupun Z showed some improvement sekarang nih, tapi mengikut kata Paula, it's going to be a very slow phase.

sekarang Z masih belum boleh crawl on his 4 point positions. walaupun dia dah selalu berada dlm that position, dia masih belum boleh move his hands forward. kata paula he still cannot bear his own weight dgn sebelah tangan. sebab tu lah dia tak boleh merangkak ke depan..

4 point position

mama tanya lah apa lg yg boleh kita buat utk membantu, dia still suruh ulang the same sit-up exercise. hhmmm.. mama agak keciwa lah disitu.. kalau dah tahu that exercise kurang berkesan, sepatutnya kite ubah lah sikit step nya kot? tak kan takde bende lain yg boleh dibuat?

no, mama tak keciwa dgn pencapaian Z. mama tahu Z dah berusaha bersungguh2 pun.. mama bersyukur sangat Z dah boleh merangkak serata rumah. and mama tahu 1 fine day Z will be able to walk like normal kids. mama cuma sedih sebab mama rasa mcm x dapat membantu..

semalam jugak baru dapat letter from St Michael House. confirm additional budget cut from government. mama tanya lah paula tentang speech theraphy n home teching yg sepatutnya start bila Z masuk 18months. dia cakap home teaching maybe takde masalah kot.. but the speech therapist agak susah sekarang ni. mmg tak cukup staff katanya..

mama dah try survey for private one. tapi semuanya jauh (yg specialised for DS laa.) hmm.. dlm masa yg sama, bos mama (anak dia pun under SMH for Cerebral Palsy) nasihatkan supaya mama tak pergi ke private dulu. sebab once SMH dah tahu mama pakai private, diorang akan slow kan their service and will give our quota to others yg lagi memerlukan.. and the best specialist still come from government (cuma now x cukup staff aje). Buntu.

exercise cara mama

the only thing yg mama boleh buat sekarang adelah do my own research and try to practise any advice i got from my reading lah. tapi masa pulak kurang mengizinkan.. sehari 2 jam lebih jer mama bersama Z. masa tu lah nak makan, masa tu lah nak bermanja, masa tu lah nak main, masa tu lah nak belajar, masa tu lah jugak nak exercise.. sigh..

Minggu yg memenatkan..

..utk mama dan Z.. but we have fun :)

Hari selasa pagi, we had playgroup activity at SMH. Mama ambik half day for this. Actually this was our first time joining the activity.
So, masa kat ‘sekolah’ tu, bukan saje Z yg termanggu2 masa diorang nyanyi2 n using sign language, mama pun tumpang terlopong sama.. hahaha.. hentam sajelah yer Z.. most of them dah start home teaching pun, and the playgroup started since last month lagi. so diorang dh ada basic knowledge dah la.. Z jumpa kawan2 baru, antaranya Tom, Ella, Liddy, Dean and Robbie. Ade lg 4-5 org, tapi mama x ingat sangat nama mereka.. Semuanya lebih kurang baya2 Z aje.

Abis sekolah around 12.30, kami pun bergegas2 balik. Z tertido dalam perjalanan sebab mengantuk dan letih sangat.. sampai rumah, mama terus makan2 and siap2 ke office pulak.




Ptgnya mama balik office awal sikit, sbb malam tersebut mama ada course utk new parents dekat SMH la jugak. But this time mama pegi sorang aje. Kesian Z kene tinggal. Akibatnya dia meragam tak mahu tido. Kata cik nanny pukul 9 baru terlelap. Mama balik rumah dah pukul 10 malam, tengok Z dah terbongkang.. bila mama nak angkat Z masuk bilik, Z boleh pula terjaga and terus peluk2 mama.. alololoo.. sayang mama nih.. Z mmg x penah lagi kena tinggal memalam nih. terus dia dah tak nak tido n nak main2 dgn mama.. mama pulak teramatlah mengantuknyaa.. around 12tgh malam tu, mama mmg dh tak boleh tahan dah.. terus terlelap .. tapi mama biarkan aje Z main2 sorang2 kat sebelah mama.. entah sampai pukul brp pun entah lah Z berjaga malam tu.. bila mama bangun pukul 6 pagi tu, tgk Z masih lagi nyenyak tido, so mama biarkan aje lah.. sedar2 pukul 9.30pagi baru Z bangun.. mesti penat sgt dah tu..

Mama x pegi pun last week course, diorang ada panggil experience parents utk ceritakan kisah hidup.. mmg meleleh2 lah kata kawan2 yg mama baru jumpa. This week pulak diorang kasik information pasal diagnosis and where to go from there. pastu plak suruh parent2 bercerita on how they cope with the situation.. aduss, maleh betul mama nk bercerita.. tahaaannn aje lah air mata nih sambil bercerita.. life must goes on gitu.. :)

Hari rabu pulak Z ada appointment dgn Ophthalmologist Dr Emer. So, mama half day lg lah. appointment nya pukul 11.15, pukul 11 dah tercanguk kami berdua di SMH tu.. sekali tunggu punya tunggu punya tunggu.. pukul 11.45 tu receptionist dtg ckp kene delay skit sbb dr emer blom sampai.. expect pukul 12.30 camtu haa.. whaatttt..?? Z dah start mengantuk n cranky. Bawak pegi bilik mainan pun dia dah tak layan.. berdukung jer lah sampai ke sudah.. dr datang pukul 12.45, terus titiskan drop dlm mata Z and suruh kami tunggu lg 10 minit. Dah 10 minit tu, dia dtg jenguk2 mata Z for 3 minits, dah siap katanya… everything is ok except for the watery eyes problem yg mama komplen tu lah. Mata Z mmg selalu berair.. bukan setakat berkaca2 tu aje, mmg siap meleleh2.. terutama kalau terdedah pada angin atau cuaca yg sejuk. Kalau tgk tv pun kadang2 meleleh2 jer air mata Z. selalu mesti org tegur ingatkan Z melalak. Walhal, Z bukan lah jenis yg suka menangis2 nih.. :)

Mama risau jugak kalau2 ada problem ke apa.. from pembacaan mama, disebabkan mata Z yg berbentuk almond shape tu, maka dia punya drainage hole dekat penjuru mata tu pun sempit lah sikit berbanding kanak2 biasa.. jadi, bila dah kecik, senang lah nk blockage – clogged ducts - maka melimpah2 lah air matanya keluar.. (air mata mmg lah selalu keluar sbb nk cuci2 mata gitu kan). Tapi takut jugak kalau2 ada masalah lain lg besar ke..
But Dr emer cakap everything looks fine. Dia suruh mama urut2 bawah mata Z for about 5 minits everyday and always wash his eyes with wet cotton. Lg 3 bulan buat follow up, kalau tak ok jugak, kena la pegi spital utk buat procedure..

So, utk 3 minit check up tersebut, kami telah menunggu selama 2 jam.. pffttt!!

Anyway, lepas jumpa doctor, terpaksa lah kami gegas2 utk balik. Mama kena masuk office before 2.15, kalo tak nanti merah plak punch card mama.. lari punya lari.. (mama jalan kaki jer pegi office) mama sampai office pukul 2.25. huh, buat penat lari jer.. lambat jugak…

Keje office sgt banyak sekarang sbb dah year end n audit pulak tu.. jadi, mama kena la stay back utk cover time off yg mama ambik tu.. around 7 baru mama balik, Z mcm biasa mestilah gumbira bila mama balik.. mama n Z nyanyi2 sekejap dgn CD yg dibekalkan from sekolah semalam tu.. lepas makan dah pukul 8 lebih, Z masih tak mau tido. Mama memang dah penat tersangat dah.. last2 mama letak Z dalam jumperoo. Biar Z lompat2 sensorang sampai penat.. pukul 8.30 camtu, Z akhirnya kepenatan dan tertido jugak.. mama boleh pulak terlelap jugak depan tv tu..

Khamis, ptg ada appointment dgn physio pukul 4.30. pukul 4 mama pun dh punch out (merah lagi! Sepatutnya 4.15 baru boleh balik.. whatevaa..). gegas2 balik rumah, elok sampai aje, Paula the physio pun sampai.. lepas habis physio, mama tgk jam baru pukul 5 lebih, hmm.. mama dpt newsletter from Mothercare diorang dh start autumn sale, so, Z jom teman mama :D. Maka kami pun keluarlah jalan2 ambik angin petang yg sejuk hingga ke tulang tu.. sekejap aje lah keluarnya.. mama Cuma belikan Z baju tidur n shirt2 yg sedikit tebal utk menyambut winter nih. pukul 6.30 dah balik rumah..

Petang ni (jumaat) papa balik.. nanti kite ajak papa pegi jenjalan lg yer Z…yeay!

Looking forward for the weekend :D

Jom Diet

Semalam we had our first meeting with dietician, Val. Disebabkan Z is on milk free diet (due to lactose intolerance) maka his paed sedikit concern lah takut tak cukup nutrient ke apa ke.. lalu dia refer kitorang to Val. Alhamdulillah setelah dikaji selidik jadual susu dan pemakanan Z, she is very happy with our diet. Dia jugak telah memberi sedikit maklumat berkenaan milk free diet with manuals on things that Z should avoid and some recommended list of things that we could try on his diet.

Val jugak dh went through the nutrient list on Z formula milk – SMA Wysoy (Soya Based). Ramai paed concern with baby yg ambik soy milk nih sebab diorang takut x cukup nutrient and what not.. tapi according to Val, SMA Wysoy yg Z ambik tu mmg dh di adjust utk baby and have include all required nutrients. So we don’t have to worry. Mama ada jugak Tanya if Z require additional supplement or not, and she strongly disagreed to supplement. Dia ckp selagi baby look healthy, why should you gave them extra supplement?

Another important thing mama learnt yesterday, baby with DS (or Val prefer to call ‘our baby’) are very quiet, so even though they are hungry, they wont scream for it. You can only notice that they are really hungry when they eat a lot! Owh, no wonder lah Z tak pernah hirau pun kalau mama kasik makan/minum lambat.. tapi mmg licin lah dia sapu lepas tu.. rasa bersalah sgt pada Z sebab kalau pegi travel normally mama akan kasik makan/minum lambat.. siannn anak mama, mesti kelaparan sebenarnya..

Nasib baik lah mama memang dah sediakan timetable utk Z dari dulu lagi. And mama memang selalu ingatkan cik nanny suruh follow the schedule! Takde lah strict sgt pun, but at least every 3 hrs tu, sama ada Z nak atau tak nak, mama memang paksa cik nanny buatkan susu utk Z. sometime Z mmg tak mau langsung pun, but its ok.. mama tak kisah lah membazir sikit susu tu.. yg penting mama tak mau anak mama kelaparan..



Fluid intake for baby at Z’s age should be around 1 liter. So far Z only take about 700ml gitu jer (4 oz X 6 times a day). Tapi Z ada jugak lah minum air masak and juice in between, so Val cakap ok lah tu.. Z mmg tak minum banyak per intake. Mama tgk baby lain boleh jer habiskan 8-9 oz sekali minum.. Z nak habiskan 4oz tu pun susah.. but again, it is normal lah for ‘our child’ to consume in small quantity at one time katanya..

We also check his iron intake. Mama pun tak ingat sangat lah figurenya brp.. tapi susu Z tu dah provide most of the daily iron requirement pun. Tapi since Z punya iron level nih selalu on the lower side (mama pun sama lah), so Val nasihatkan utk add more red meat to his meal. Mama mmg jarang2 kasik Z makan daging. Sebab daging kat butcher (halal of course) bawah tu x elok sangat. Banyak lemak n urat2, bila blender pun still berketul2.. lepas nih mama kena g carik kat kedai yg jauh sikit lah.. mama selalu jugak add spinach to his nasik, tapi Val ckp walaupun spinach is rich with iron, sebenarnya kita nih tak absorb banyak pun nutrient from green vegetables.. body kita lg senang absorb from meat sebenarnya.. OOoooo… gitu rupanyaa.. so, red meat and egg yolk should be given to Z 3-4 times per week lah.. mama x penah cuba kasi Z makan egg lg. this weekend kita cuba yer..

Another thing is, make sure the portion is 1/3 in every meal. 1 bhgn sahur, 1 bahagian meat/protein, and 1 lg bahagian utk nasik or pasta (carbohydrate).

Jadual pemakanan Z so far;

6.30am: milk 5-6 oz
9.00am: b/fast fruits - apple, pear, butternut squash, peach (steam/baked + cereal (rice) – ni mmg mama dh prepared awal2 and frozen.
10.00am: milk 3-4 oz
1.00pm: Lunch - brown rice + meat + veg (chicken, meat / salmon and sweet potato/spinach/carrot/white potato)
1.30pm: milk 3-4oz
4.30pm: milk 3-4oz
7.00pm: dinner brown rice + meat + veg (same as lunch)
7.30pm: milk 2-3 oz
10.00pm: milk 3-4oz (with cereal)

Val suggest to add snack before dinner sbb mcm panjang jer gap nya. And she suggested soya pudding added with slices of fruits. Or kalau dapat jumpa milk free biscuits for baby pun bagus katanya.. hmm, mama dah penah carik dulu, x de pun.. nanti petang mama g carik lg lah..

So, itu saje lah kot for this meeting. We will meet again in 3 months time.

papa mengamuk

malam ni @ 7.30pm sepatutnya ada induction night for early learning service di St Michael's House. and just now (@4.00pm) they just called to let mama know that it was posponed to next week! and papa baru jer reach dublin! he has to take half day off today just to attend the course and dia terpaksa bergegas balik ke sligo malam ini jugak sebab besok kerja! and turn out it was cancelled!! mau ke papa tak mengamuk... huhuhu.. kesian dia.. 3 hrs ++ for 1 way journey tu.. dh brp jam papa terpaksa habiskan atas jalan.. sia2 aje.. :(

mama pun mcm terkelu jugak lah bila diorang call tadik. sigh, ini yg mama menyampahs dgn SMH ni.. dah brp kali dah appointment cancel.. ini course pun boleh cancel kaa.. dah la this course is for 3 weeks berturut2.. surat reminder bertali arus suruh parents attend, last2 tak jadik.. tahu lah free, tapi biarlah professional sikit.. org lain pun ada hal lain jugak nk kene attend... kesian papaa.. next week nampak gaya mama kene pegi sorang2 lah sebab papa dah malas nk layan katanya... huhuhu..

2nd Physio

Alhamdulillah demam Z dah beransur baik.. not 100% recovered yet, kadang2 suam2 sikit.. kadang2 masih cranky2.. tapi mama dah tak risau sangat lah sbb temperature takde lah over 38..

semalam the physiotherapist dtg for 2nd visit, tapi x de lah belajar mende baru pun.. sbb dia cakap Z blom ready lagi.. now kene focus utk strengthen his abdominal and back area dulu. so mama kena carry on dengan sit up exercise tu lah. actually salah mama jugak, masa 2 weeks on holiday haritu, mama mmg terlupa terus nk kasi Z exercise.. lgpun Z kan tak berapa sihat.. tak per lah.. slow2 pun x per, yg penting ada improvement.. :)

talking about improvement, Z actually dah achieved a lots this few weeks :D. started with comando crawling. sblm balik m'sia tu Z mmg dah boleh maju ke depan sikit2.. tapi masa balik m'sia, especially masa kat rumah atok kedah, Z terus jadik pakar.. maybe sebab rumah atok luas, new environment pulak tu, maka Z tersangat excited utk explore sekeliling. laju jer dia ke sana ke mari. pantang letak, ada aje akal dia.. sampaikan mama n papa terpaksa bentang tilam n tidur bawah aje.. sbb sampai ke tengah malam Z masih lagi meng'explore' rumah atok :D. sedih jugak lah bila nak tinggalkan kampung haritu, sebab mmg nampak Z sangat2 happy kat sana.. maybe dia masih ingat kut, itulah rumah pertama dia dulu.. :)

bila balik sini, dah kurang sikit activity comando Z. rumah sini pun sempit aje, bergerak kedepan sikit dah jumpa dinding, so lebih baik Z tgk tv aje agaknya.. hmm.. mama kalau boleh nak pindah rumah yg ada laman lah.. boleh Z bergerak bebas sikit.. tapi kalau nk rumah atas tanah, nak kena pindah kawasan pinggiran bandar sikit, susah pulak mama nk pegi balik keje nanti.. *sigh*..

anyway, apart from that, Z juga dah ada sebatang gigi!! yea! gigi atas.. baru keluar separuh.. then gusi bawah pun dah nampak makin keras dan putih.. tak lama lagi lah tu kot..

next few weeks nih St Michael House ada anjurkan few courses and group meeting for early learning. ada course malam, ada jugak yg siang.. hmmm.. kalau malam tu, mcm susah jugak lah kot mama nk pegi memandangkan mama sorang2 jer ni kan.. hopefully papa dapat lah cuti utk temankan mama.. yg meeting siang2 tu pulak, mama kena lah ambik cuti.. tapi mama x kisah sgt bab2 cuti nih.. rasanya boleh jer kot.. cuma yg malam tu jer lah menjadi sedikit bebanan.. tgk lah mcm mana nanti.. mama tahu bende2 ni semua penting utk Z. mama akan cuba lah utk menghadirkan diri yer..

k lah, nanti2 mama update lagi.. banyak keje kat office sekarang nih sbb baru lepas cuti kan.. computer kat rumah pulak dedua dah rusak sblm balik m'sia haritu.. insyaAllah weekend nih papa balik, mama boleh lah pinjam laptop dia utk update percutian kat malaysia haritu..