Physiotheraphy, Occupational Theraphy & Stimulatheraphy...semua untuk Khalish

Assamualaikum,

Umur Khalish dah 1 year 8 months (kalau corrected age 1 year 5 months la) Khalish boleh mengiring tapi dia masih belum pandai merangkak dan duduk lagi. Mummy bawak Khalish ke sessi physiotheraphy dan occupationaltheraphy kat hospital tapi tak cukup la...cuma dapat sebulan sekali je. Sessi bukannyer lama sejam aje tak banyak yang Khalish dapat belajar. Nak buat sendiri kat rumah boleh tapi kita bukan ada equipment yang banyak dan Khalish pun pandai kalau dengan Mummy dia bukan dia nak buat lebih menangis je. Mummy scout around tengok-tengok ada tak private punya tapi tak nak mahal. Kalau hospital private satu sessi je dah dekat seratus. So tengah carik-carik tu terjumpa la Greatlife Physiotheraphy Centre...yang bestnyer ada cawangan kat Shah Alam Section 13. Ok la dekat rumah tu. Bila pergi first time Khalish ok tak la menangis sangat macam kat hospital, Therapist kat situ pun pandai pujuk Khalish. Harga pun berpatutan. So Khalish pun pegi terapi kat situ seminggu sekali.

Bagi yang tak berapa faham dan tak tau nak bezakan antara Physiotheraphy, Occupationaltheraphy dan Stimulatheraphy ni serba sedikit penerangannyer :

Physiotheraphy :
 Fisioterapi adalah singkatan bagi fisio iaitu fisiologi yang membawa makna fungsi dan terapi sama maksud dengan penjagaan.Jadi makna fisioterapi ialah penjagaan atau pemulihan kefungsian.

Occupationaltheraphy / Terapi Cara Kerja :

Latihan aktiviti-aktiviti yang bermakna untuk meningkatkan tahap kefungdian seharian dan mencegah ketidakupayaan atau kecacatan ke atas individu yang mempunyai masalah mental dan fizikal pada semua peringkat umur.

 

Stimulatheraphy :

 Terapi ini ialah satu terapi holistik yang berupaya menyeimbangkan tubuh badan, minda dan semangat sekaligus merangsang atau menggalakkan kepada gaya hidup yang sihat. Terapi ini adalah satu kaedah rawatan yang berasaskan sistem perubatan tradisional. Stimulatheraphy ni buat kat Kak Ija, Pusat Kesihatan Stimulatheraphy Klang. Alhamdulillah, lepas satu sessi ada perubahan Khalish start berselera makan.

 

Ketiga-tiga jenis terapi ni memainkan peranan penting dalam perkembangan Khalish. Sekarang ni Mummy start bawak Khalish Hydrotheraphy sebulan sekali. Hydrotheraphy ni ialah rawatan dalam air. Khalish ni takut air sikit sampai sekarang masih mandi dengan air suam kalau air sejuk dia menggigil macam mandi dalam ais. Mummy rasa Khalish drama je lebih sebab dulu dalam NICU mandi pukul 7 pagi relex je tak nangis, hehe...tapi bila masuk dalam kolam hydrotheraphy ni dia macam suka pulak siap main-main lagi dalam kolam.

Hajat Mummy kalau Khalish dah biasa dalam kolam boleh lah Khalish belajar swimming.

 

Ini la sedikit sebanyak aktiviti Khalish...hmmm, macamana lah Mummy nak kerja balik sibuk dengan aktiviti Khalish. Tak pe la berkorban demi anak tersayang kan?

 

Khalish tengah buat latihan merangkak

Khalish & Zahra..geng Stimulatheraphy

Khalish tengah buat Hydrotheraphy

 

 

 

 

Raya Gathering of NICU Babies born 2012

Salam...dah lama tak tulis blog, dalam otak ni asyik terfikir 'must write blog frequently' tapi tak kesampaian jugak. I'm one of the oldest dalam geng mak-mak NICU dulu dan Khalish antara paling lama dalam NICU so doctors & nurses kenal la...kekawan selalu je suruh organisekan gathering antara parents baby NICU ni. So dengan semangat berkobar-kobar Mummy Khalish ni pun contact la Matron tanya ada bilik seminar tak untuk buat gathering ni. Lagipun alang-alang buat gathering why not buat kat hospital je at least kita boleh ajak staff-staff NICU sekali. Tak terbalas jasa dia orang ni jaga anak-anak kita masa kat NICU dulu yang boleh kita ajak dia orang ni makan-makan dengan jumpa balik anak-anak yang dia org pernah jaga dulu. Mummy pun create la event kat FB untuk discuss dengan parents pasal gathering ni. Mula-mula semangat je mak-mak ni bagi idea tapi sebab masalah tarikh ramai pulak yang tak dapat datang. Planning buat lepas raya so ramai la yang balik kampung, sedara kawin la, macam-macam lagi.
Plainning punya planning seminggu sebelum event makin ramai plak yang tarik diri. Adoi...duit collection tak cukup, Matron dah book bilik seminar pastu dah ajak staff datang. Nak cancel malu plak. Mummy pun dengan muka tak malu dan gaya ala2 'Ah Long' tiap-tiap hari tanya kekawan yang agree nak datang tu bila nak bayar duit untuk catering. Tapi nasib baik la walaupun sikit masih ada yang nak datang. Yang sponsor pun ramai. Ada yang sponsor banner, bihun, KFC, tolong buatkan decoration..Alhamdulillah. Dua hari sebelum event, ada lagi yang last minute agree nak datang, syukur budget cukup untuk buat event ni. Siap ada extra sikit lagi, hehe...
Hari event tu meriah sangat, terima kasih bebanyak pada Matron dan staff nurse Fiza yang datang awal tolong prepare. Mummy siap kena bagi ucapan lagi, hehe...Bila tengok anak-anak Prem ni rasa bersyukur sangat kekadang tak sangka dia org ni membesar. Seronok tengok gelagat anak masing-masing macam-macam gaya, ada yang dah boleh jalan ada yang masih merangkak...syukur pada mu Ya Allah atas pemberian mu ini.

Terima Kasih staff NICU datang meriahkan majlis kami

Baby Prem dengan Parents

Yeay..Khalish dapat gift, terima kasih Matron & Sister

Terima kasih Nurse semua tolong jaga anak kami

Marhaban Ya Ramadhan 2013

Selamat Menyambut Puasa...tahun ni tahun ke 2 Khalish menyambut Ramadhan. Masih teringat lagi puasa tahun lepas, baru sebulan lebih bawak Khalish discharge dari NICU. Masa tu Khalish masih pakai feeding tube di mulutnyer lagi...banyak dugaan puasa tahun lepas. Khalish banyak kerenah masa pakai tiub, beberapa kali tiub nak tercabut dari mulut sebab Khalish asyik tolak tiub tu dengan mulut dia terpaksa la Mummy dia beranikan diri masukkan perlahan dan tape kan balik. Tapi di bulan puasa jugak la Doctor Michelle, doctor Paediatric Khalish di Hospital Sg Buloh decided nak try cabut tiub Khalish. Mula-mula dia tak confident jugak Khalish boleh hisap susu pakai botol. Dia risau Khalish tak pandai nak menghisap dan bernafas pada masa yang sama (sebelum discharge NICU dulu dah cuba tapi Khalish hampir jadi biru tak bernafas) itu yang bawak balik dengan tiub tu. Tapi Alhamdulillah my hero steady je hisap susu pakai botol depan dia, so terus dia suruh Mummy room in sehari dua tengok Khalish ok ke tak kalau cabut tiub. Mummy pun apa lagi bergegas balik rumah packing untuk tido hospital sehari dua. Lepas dua malam Khalish pun boleh discharge tanpa tiub, Alhamdulillah syukur...tak perlu lagi risau tiub tercabut tengah-tengah malam! 

Lepas seminggu discharge dan Waleed dia pun dah balik ke Jeddah untuk menyambung tugas, Khalish batuk2 teruk dan demam pulak. Mummy panik la decided pergi ke Sime Darby Medical Centre, Subang je terus kena warded kat sana. 3 hari duduk sana macam2 test buat sebab doctor takut susu Khalish minum masuk ke lungs pasal tu Khalish batuk dan demam. Test semua ok tapi Khalish kena nebulizer untuk clearkan lungs dia. Doctor suspect Khalish ada asthma. Tak menghairankan la sebab family Waleed dia hampir kesemua makcik dan pakcik dia termasuk la Atok Khalish ada chronic asthma. Sedih jugak la Mummy buka puasa dan sahur sorang2 tapi demi kesihatan Khalish Mummy tabahkan hati. After discharge tu batuk Khalish masih tak kurang. Ulang alik klinik banyak kali kena nebulizer banyak kali. Mummy try plak pegi Hospital Sg Buloh bahagian kecemasan. Siap2 packing barang lagi confident je kena warded. Pegi berdua je dengan Khalish takde orang nak temankan nak harapkan family dia orang pun sibuk dengan hal masing-masing. So Mummy kuatkan semangat di bulan Ramadhan pergi uruskan hal Khalish sendiri aje. Doctor check dia kata lungs clear takde masalah so dia bagi ubat batuk je. Lepas a few days barulah Khalish kurang batuk. 

Raya tahun lepas Khalish still kena quarantine lagi (baby premature lepas discharge kena quarantine selama setahun) so Mummy tak jalan raya la duduk rumah layan rancangan raya kat Astro, hehe...Tahun ni lagi meriah la untuk Khalish dan Mummy, Khalish dah boleh jalan raya. Baju kurung Johor raya Khalish dah ready sedondon dengan Mummy. Walaupun setiap tahun Waleed tak dapat balik raya tapi Khalish sentiasa dikelilingi oleh family yang manjakan dia. Hopefully next year Khalish dapat raya dengan Waleed dia...

Khalish raya tahun lepas still tak muat baju Melayu

Khalish dikelilingi cousin-cousin dia

Khalish & the Geng

Memandangkan Mummy Khalish ni tak bekerja dan Waleed Khalish balik cuti enam minggu sekali je...Mummy & Khalish ada banyak free time selain dari pegi terapi dan appointment hospital. Khalish & Mummy dapat ramai kawan masa Khalish di NICU. Salah seorang yang dah jadi BFF ialah Nora dan anaknya Dhia. Dhia lahir 2 bulan selepas Khalish...lahir pada 25 minggu dengan berat 700gm+, Dhia pun fighter macam Khalish jugak. Dhia ni lahir je terus masuk incubator sebelah Khalish. Mama Dhia without fail tiap-tiap hari visit Dhia. Nora cakap Allah temukan kami sebab masing-masing memerlukan each other. Memang betul terutamanya saat-saat anak kita berdepan dengan pelbagai masalah kesihatan anak kita perlukan support, memang kita dapat suppport dari suami tapi kadang-kadang kita jugak perlukan support dari teman wanita jugak sebab hanya wanita yang memahami naluri seorang ibu. Selama lebih kurang 100 hari Khalish di NICU ramai yang kami jumpa, ramai jugak yang masih keep in touch, dengan nurses di NICU pun masih ada yang keep in touch lagi. Sekali sekala ada jugak kawan-kawan, seronok jugak gathering ni tengok macam-macam ragam anak masing-masing. Next project nak buat gathering raya dengan kawan-kawan dan nurses kat NICU...

Weight Problem...

Di sebabkan Khalish x nak makan and minum susu for a few days (cerita dari post yang lepas), berat Khalish turun! Last month 4.6 kgs last check kat Paeds Hospital Sg Buloh dah turun jadi 4.39 kgs. Doctor sangat concern about his weight that she wants Khalish to be tube fed! Waaaaa....my nightmare datang balik! For those of you yang tak de experience with tube feeding ni explanation nyer :

Tube feeding is a method of providing nutrition to people who cannot sufficiently obtain calories by eating or to those who cannot eat because they have difficulty swallowing.  Tubes which transport nutritional formulas can be inserted into the stomach (G-tubes), through the nose and into the stomach (NG-tubes), or through the nose and into the small intestine (NJ tubes). The NG and NJ tubes are considered to be temporary and the G tube is considered more permanent but it can be removed.

Biasanyer premature baby bila di NICU akan di beri tube feeding ni sebab baby premature tak pandai nak hisap atau menelan tak macam baby biasa. Khalish dari lahir sampai lah discharge dari NICU pakai tube feeding. Ya Allah betapa sukarnyer bila bawak balik dengan tiub ni. Bila kecik lagi masih boleh control pergerakan baby kita tapi bila dah besar sikit dah pandai tarik memang la kena hati-hati. Tiub ni amat mudah tercabut dan kita yang tak de medical background ni tak boleh sesuka hati nak insert balik tiub ni. Kena la pegi hospital untuk mintak pasang balik. Susu yang diberi pada bayi kita akan dimasukkan ke dalam tiub menggunakan syringe. Sebelum tu kena check dulu samada tiub tu betul kedudukan atau tidak. Takut tiub tu bergerak bila kita masukkan susu tu susu tu tak pergi ke perut sebaliknyer turun ke paru-paru. Sangatlah bahaya. Masa bawak balik Khalish dengan tiub tu dulu Nurse train dulu untuk check kedudukan tiub dengan cara-cara bagi susu yang betul. Hisshh bila Doctor suruh masuk tiub balik teringat balik kenangan masa dulu...rasa nak nangis aje bila teringat betapa susahnyer guna tiub ni dengan kesian Khalish tak selesa dengan tiub dalam badan dia.

Lepas merayu pada Doctor dia bagi peluang untuk Khalish naikkan berat badan dalam tempoh tiga bulan. Adoiiii...risau nyer! Sekarang ni tengah berusaha untuk naikkan  berat badan Khalish. Tukar susu baru, letak Carborie (untuk tambah kalori), bagi air beras, macam-macam petua dah cuba. Harap-harap bertambah la berat badan Khalish.

Anyway, berbalik kepada tiub feeding ni ada 3 tempat boleh insert tiub ni...melalui mulut, hidung atau perut. Mulut dan hidung ni tak selesa la sebab setiap masa kena pakai tapi yang ni untuk sementara sahaja kalau perut (G-Tube) ni permanent tapi selesa la sikit baby boleh bergerak tanpa restriction. Kalau dah takde choice saya akan memilih and insist on the G-Tube ni sebab dah tau sangat kalau insert tiub kat hidung confirm Khalish akan tarik. Dia terlalu sensitif kalau nak letak ubat kat hidung atau telinga pun susah ini kan plak tiub yang sentiasa akan ada pada hidung dia. So in this three months' time I will try my best to get Khalish to gain weight, InsyaAllah....

Khalish masa baru discharge

Tiub feeding melalui hidung

Carborie-ditambah dalam susu untuk menambah berat badan

Khalish Mogok Lapar!

Khalish refuse to drink milk! Aduh risau sangat...dah 3 hari tak minum apatah lagi nak makan. I'm wondering did he forget how to suck? Is this because of Celebral Palsy that he suddenly forget how to drink milk? Puas paksa I even use syringe but he just refused. At first, Khalish batuk and selsema. Badan kadang-kadang panas, kadang-kadang ok je. Dah pergi three doctors the last one did not even give any medicine she asked me to try home remedies instead. Give 3 ml mixture of honey + black pepper (grind). At first I'm a bit worried of the black pepper. Dah la Khalish 3 hari tak minum, perut pun kosong nak bagi black pepper lagi. She said trust me batuk nanti kurang. She even call me at home just to check on Khalish. True enough the batuk kurang tapi still tak nak minum susu. So the next day I called my niece, she's a Housemen at Hospital Sg Buloh. Suruh dia bawak stethoscope lagi so that dia boleh check lungs Khalish. She said the lungs clear batuk not so bad and Khalish is still active so that's a good sign. Give him time nanti dia minum balik nothing to worry about. But being a mom, I'm still worried. Again, we went to the doctor this time a Paediatrician. We went to Klinik Kanak-Kanak Meghana at Taman TTDI Jaya, Shah Alam. By this time Khalish is only drinking about 3 ml per day! Usually he drinks 5 ml every 3 hours! Told her the history of Khalish, she check ear, nose, throat, lungs..takut lungs dia sakit ke yang sebabkan dia tak nak telan. But all OK. She does not know the cause of him not drinking. So her advise is to get Khalish admitted by that night at least the hospital can do some test on him. By this time Khalish is so cranky he cried non stop for 2 hours. We went back home and my sister and brother in law send us to Hospital Sg Buloh at 11.30 malam tu. Macam ni la kalau hubby kerja jauh kena mintak tolong orang..I packed sikit-sikit sebab ingat nak kena admitted. We went straight to Emergency. Tunggu sampai pukul 12.30 malam orang ramai sangat. The doctor nak tengok sendiri Khalish minum so cuba la bagi susu dia depan doctor. Depan doctor nak pulak dia minum! Hiisshh Khalish ni! Sajer je tau! So apalagi Doctor pun cakap tak payah admit la, katil pulak takde ward penuh. So balik la rumah...Alhamdulillah now dia dah start minum susu balik tapi tak sebanyak dulu la especially kalau malam dia kurang minum tapi the good news is dia nak makan! Selalunyer berperang nak bagi dia makan now dia tak melawan kalau suapkan kat dia. Hopefully berterusan la selera makan dia...

Khalish ponteng Terapi...

Khalish is not feeling well...dah a few days badan panas, batuk & sakit mata. Khalish attend two types of theraphy...one is Physiotheraphy and another is Occupational Theraphy. He has to attend theraphy session because of his developmental delayed. This is due to his Hydrochephalus. For those of you who are wondering what is Hydrochephalus, here's the answer :

A condition in which fluid accumulates in the brain, typically in young children, enlarging the head and sometimes causing brain damage or for more simple terms, 'water on the brain'.

Kadang-kadang kita ada nampak baby yang kepala dia besar dari badankan? Ha..itu la penyakit Hyrochephalus!

At first masa doctor detect problem ni, doctor Neurology nak pasang shunt right away. Shunt ialah a device that diverts fluid from the brain into the abdominal cavity where it is safely absorbed into the blood stream. I'm not a doctor but what I understand is that this shunt is use to drain the water from the brain. The doctor decided to wait for Khalish to grow because it's too risky to do the operation with his low weight condition. Alhamdulillah, as he grows the water is static air x bertambah. But the effect of this Hydrochephalus is that he has Celebral Palsy. 


CP (Cerebral Palsy/ kelumpuhan otak besar) adalah suatu keadaan dimana penderitanya mengalami masalah pengendalian otot, kekakuan, kelumpuhan serta mengalami gangguan fungsi saraf lainnya. CP bukanlah merupakan suatu penyakit dan tidak bersifat progresif (penderita tidak semakin memburuk dan juga tidak semakin baik). Secara umumnya, palsi serebrum boleh dibahagikan kepada tiga jenis iaitu spastik (spastic), athetosis (athetoid) dan ataxia (ataxic).

We are not sure Khalish's fall into which category doctor have not decided yet he's still too small. But we pray that it is just mild...but still he has to start doing theraphy. Untuk Fisioterapi, Khalish belajar meniarap, merangkak & duduk. Untuk Occupational (terapi carakerja), Khalish banyak belajar pergerakan tangan contohnyer macam belajar angkat toy dan main dengan toy. Khalish suka kalau pergi Occupational Theraphy, abang yang ajar Khalish tu pandai pujuk dia main tapi kalau pergi ke Fisio dia mengamuk hentak-hentak kaki. Theraphist kat situ garang sikit dah dua kali dia suruh Khalish balik sebab Khalish nangis! Now the theraphy session is only once a month sebab ramai sangat patient kat Hospital Sg Buloh. I guess I need to find a private Theraphy Centre. Sebulan sekali tak cukup untuk Khalish. 

So, berbalik kepada kes demam Khalish...last week dia ada 2 terapi session tapi kena postpone sebab Khalish tak sihat. Sure dia tak nak buat kat rumah pun banyak merengek. Hopefully dia cepat sembuh. Mummy needs to do a lot of errand next week, huhuhu...Waleed dia balik lambat lagi early next month risau plak kalau demam Khalish melarat.

Khalish's First Birthday!

Last February was Khalish's first birthday (the day he was born) tapi kalau ikut his corrected age dia baru je 9 bulan. For those of you who do not know what is 'corrected age' the calculation is lebih kurang macam ni :

Actual age in weeks minus Weeks premature = Corrected age

So Khalish are supposed to be born in May tp dia lahir in February instead so dia lost 3 months kat dalam perut. That means kalau dia umur 12 bulan the corrected age for him is 9 bulan.

Anyway, I still want him to have his birthday party on his born day. His Waleed is not around he is not due back for his vacation yet (Khalish's Waleed works in Saudi Arabia, he only comes back every 6 weeks). My brother offered his place as a venue for the party. My niece & me did the preparations. We did the cakes, candy buffet, food & party decorations. It is also good for our business because my niece & me have been doing this cake business for awhile now. I invited families & a few of my friends. Almost everybody came...we had a nice time. Khalish is well behaved but a bit grumpy sbb dia x tido since morning. The theme was 'Elmo' because Khalish loves the 'Elmo song' so much..hehe.

Oh, I'm so blessed to have Khalish in my life. Khalish is so strong despite the challenges that he faces so early in life. He taught me so much...to be patient, strong, to be grateful. The months that I spent in NICU visiting him every day rasa macam baru lagi and yet it's been a year. Thank you to families & friends yang tak berhenti berdoa untuk Khalish, my hubby & me really appreciate it. Tak terbalas oleh kami.

Khalish's Grumpy Face, hehe

Khalish jumpa kawan NICU

Khalish with Kak Era

The Story of Khalish

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Assalamualaikum bloggers...my adventure with Khalish begins in 2012 when I was in Jeddah, Saudia Arabia. Encik Hubby & me was working in Saudi as a Flight Attendant since 2006. We met there, got married and after 4 years of marriage we got a pleasant surprise! I was sick with flu and just came back from  Jakarta flight. We decided to go to the clinic and the doctor wanted to give me a jab only then I remembered that I was abt 2 months late. The doctor did the pregnancy test and what a surprise I was pregnant. We were in tears when the doctor told us because we have almost given up hope of having a child of our own.So we told everyone at home in Malaysia the good news and decided almost immediately that I need to go back home and not flying anymore. 

And so, back to Malaysia I go but I went back alone, hubby needs to work. After 26 weeks of smooth pregnancy, I experience pain kind of like when you were having period pain. I went to see a gynecologist at a private clinic about it but she said that it is a false contractions. So I bear the pain for 2 days till around midnight I can't take it anymore...I asked my hubby to send me straight to Sg Buloh Hospital. (Lucky hubby was around at that time!). The doctor said it cannot wait anymore the baby is ready to come out. I had a very fast delivery. Khalish was born at 5:34 am on 23rd February 2012 at 26 weeks with a very low birth weight of 615gms . I did not even get to see him, he was taken immediately by the Paediatric team. I was told that with his extremely premature condition his chances are 50-50. My hubby and me were devastated. I didn't realised he was so small till I saw him. My heart goes out to him. Other than low body weight, he was diagnosed with a Chronic Lung Disease, Hydrochephalus and Hernia. He was in NICU Hospital Sg Buloh for 4 months plus. 

Alhamdulillah, for now he has so many doctor's appointment and theraphy. But we are taking it one step at a time. I will try to update this blog as often as I can. My main purpose of writing this blog is to share my experience and knowledge of my baby, what he went through is just amazing. I welcome feedback from you readers so that we can discuss and share our experience. Wassalam.