Update Afiq dan kimi - Nov 2012

Assalamualaikum,

Nak update sikit pasal Afiq dan Kimi,

 

Afiq

Appointment dengan pakar plastic surgery baru ni review pasal kepala Afiq. Doktor tu kata kemungkinan tengkorak ('skull') dia sudah bercantum ('fused'). So, ada satu lagi appointment 27hb 12 ni untuk tengok sekali lagi, dan lepas tu mungkin kena refer ke HUSM

 

Afiq sekarang ni start jeluok balik doh. Tiap-tiap hari jeluok, cuma sikit atau banyak je. Tak tau la apa sebabnya. Kalu ber ubat pun tak guna sebab tak lama lepas tu, jeluok.

 

Sekarang ni, tak tahu nk wak lagu mano doh. Just hanging on.

 

Kimi

Doktor sudah rekemen Kimi untuk pra sekolah di pra-khas. Itu pun lepas aku convince doktor tu. Initially, doktor suggest untuk pra-sekolah di sekolah biasa. So, sekarang ni, perlu cari sekolah yang ada pra-khas. Immediately, terlintas di kepala, Sekolah Kota. Tapi mengikut pakar Occupational Theraphy yang biasa dok rawat Kimi, Sekolah Kota tak sesuai untuk kimi sebab mostly budah down syndrome di situ.

 

Wassalam.

Update Afiq 20/09/12

Assalamualaikum,

Update Afiq's visit to ENT on 13/9/12. Lambat sikit update sebab sibuk dengan auditor daripada Kementerian Kesihatan Malaysia. Audit baru habis hari ni.

 

Payah betul nak test Afiq sebab Afiq toksey tidur.

Pada mulanya doktor (nama tak ingat, tapi doktor buat master daripada HUSM) nak admit Afiq ke dewan bedah dan akan dibius.

 

Bius !!! Bullshit!! Takkan nak check telinga pun nak bius??!!

Ayat tu ada dalam hati tapi tak keluar daripada mulut. Hampir-hampir keluar.

Nak jaga maruah doktor, di belakang doktor, aku ngepek kuat-kuat sikit biar dia tahu parent tak setuju. Dahulupun, doktor paediatric tak setuju untuk bius Afiq. Masa dekat wad hari tu, lepas kena bius, Afiq 'tak kabar'  lebih daripada 24 jam.

Selepas setengah jam, akhirnya doktor tu mari royak dia setuju untuk tidak bius tapi hanya bagi sedatif chloral hydrate.

 

Lama lepas makan ubat chloral hydrate baru Afiq tidur. Hasil test menggunakan alat tymp processor mendapati pendengaran Afiq kurang baik untuk bunyi yang perlahan. Pegawai pendengaran tu kata mungkin disebabkan ada air dalam telinga tengah Afiq, dan air tu dihasilkan oleh badan Afiq, bukan daripada luar. Masa test sebelum ni, telinga Afiq ok je.

 

So, pegawai tu kata, test 6 bulan lagi, mungkin OK kot. Insya Allah.

Istilah latin

Salam,

Hari ni 'ter' belajar abbreviation Latin yang selama ini kita dok selalu guna, tapi entah betul ke tidak. Harapnya lepas ni, istilah ni digunakan pada tempat dan masa yang betul dan dengan cara yang betul.

 

 

Abbreviation    Latin                     Translation         

per cent          per centum            for each one hundred

pro tem          pro tempore            temporary

s.o.s              si opus sit              if necessary

R.I.P              requiscat in pace    may he/she rest in peace 
stat                statim                    immediately

pm                 post meridiem        after midday   

am                 ante meridiem        before midday

e.g.                exempli gratia         for example

etc.                et cetera                and the others

Kimi's 5th birthday

Kimi's 5th birthday recently on 1st September.

 

 

Kopi & Susu

Perbezaan ketara warna kulit tangan ayah dan anak, macam ada sorang tu kata, "macam kopi dengan susu".

 

Lagi gambar raya 1433H

Salam,

Lagi gambar raya.

 

 

 

Raya photos

Salam,

Nak kongsi gambar raya. Ada lagi. Tahun ni gambar tak banyak.

 

Update Afiq 01/08/12

Salam,

Just a little update - Afiq is now 5.4kg !! Successfully breached and maintained above 5kg mark. Previously, can reach 5kg but cannot maintain; soon after, will drop back below 5kg.

Update on Afiq's visit to Plastic Surgery

Assalamualaikum,

Afiq's appointment with Plastic Surgery last Thursday yields positive news and worrying news.

 

Positive news:

Dr Shawal (plastic surgeon) agreed to do operation on Afiq's cleft as soon as possible. Could be this year. After Raya, there will be CT Scan. If results OK, they will proceed for operations. Which means at least 4 days in ward (1 day prep, 1 day op, 2 days post op). If all goes well, Afiq will soon be feeding as normal and not from gastrostomy tube anymore.

 

Worrying news:

Dr Shawal (HKB) concurred with Dr Wan Azman's (HUSM) earlier assessment that Afiq's cranium is not growing. Dr Wan Azman's assessment was that either the brain has stopped growing, resulting in the cranium stop growing, Or the cranium has stopped growing, therefore preventing the brain from further growth.

Whichever it is, both are worrying news. Dr Wan Azman was the leader of the group for combined clinic session, where experts from HKB and HUSM get together on monthly basis to review cases like Afiq's.

 

Will update more later on Hakimi.

 

Ouput of Kimi's session at CAMHS

Assalamualaikum,

Khamis lepas, terpaksa ambil cuti untuk bawa Kimi untuk appointment CAMHS di HKB. CAMHS stands for Child and Adolescent Mental Health Service. Tujuan jumpa doktor adalah untuk regular review status kimi untuk decide samada kimi perlu sekolah khas atau sekolah biasa. Tak lama lagi, kimi perlu masuk tahun 1 doh.

Apa pun, sesi ni sangat mengecewakan, sebab

1) doktor penting produktiviti - in her (Dr Rafidah) own words, "kimi boleh keluar, doktor nak tengok org lain pulak" walhal baru 5 minit masuk jumpa doktor dan doktor belum buat apa-apa pun dengan kimi selain dari baca file.

2) doktor gagal untuk berinteraksi dengan kimi. kimi tak respond langsung dengan doktor tu.

3) doktor taknak share diagnosis yang dibuatpada sesi ini

4)

5)

.

.

.

.

 

In other words, TIADA OUTPUT DARI SESI NI. Rasanya, nak sangat syarah ko doktor ni. Tapi kena control, kena cuba faham apa masalah doktor tu hari ini.

Next week (Khamis), Afiq kena jumpa pakar bedah plastik untuk buat assessment.

 

 

Photos of Kimi during occupational theraphy session

Salam,

Photos of Hakimi during occupational theraphy session at HKB recently.

 

Alhamdulillah - good news

Assalamualaikum,

Ni nak share berita baik sikit. Lambat sikit share ni, tapi bak kata orang putih, "better late than never".

 

Masa Afiq masuk wad 2,3 minggu lepas, doktor pakar paediatric tu bersungguh-sungguh suggest buat operation di bahagian saluran makanan Afiq. Operation yang dipanggil "Fundo" ni sepatutnya boleh settle masalah Afiq jeluok sokmo ni (atau dalam bahasa doktornya, "clinical GERD"). Doktor dan misi (nurse) kata senang je operation tu. Tapi hari tu aku royak ko doktor paediatric tu, aku nk bincang dengan pakar bedah (surgeon) dulu sebelum kata ya atau tidak.

 

Bila masuk wad awal March hari tu (3 hari), sepatutnya surgeon kena mari la ke wad dan explain kat aku pasal operations ni. Tapi 3 hari tu, tak nampak muka pun sorang pun. Ketua dia, Dr Tarmizi pergi umrah. Yang lain-lain, sibuk sangat agaknya.

 

28/3/12 baru ni (Rabu lepas), aku ada appointment dengan surgeon Dr Tarmizi. Alhamdulillah, bila dengar penjelasan orang yang pakar (dan bukannya dengar daripada doktor dan misi paediatric yang TIDAK buat operation dan TIDAK buat post operations care), baru paham risiko operations. Dr Tarmizi royak, operation Fundo ni, success rate 70%-80% je, so WHY TAKE RISK. Lagipun, sebab Afiq masih baby, operation ni NON REVERSIBLE sebab kalau cuba reverse, mungkin stomach lining akan koyak (kalau orang dewasa, operations ni reversible). Satu lagi, side effectnya, Afiq tak boleh sendawa. Dan lagi pula, ini major operations. Dan lagi pun, Afiq sekarang ni dah kurang jeluok nya

 

Tengok, penerangan berbeza daripada pakar (Surgeon) dan bukan pakar (doktor dan misi paediatric).

Explanation doktor paediatric simple je, seolah-olah tiada masalah. Buat operations Fundo, hilang masalah jeluok.

Explanation daripada surgeon, ada banyak TAPI nya - buat Operations Fundo, mungkin hilang masalah jeluok. TAPI high risk, major operations, tak boleh jeluok, non reversible,

 

So, conclusion daripada perbincangan dengan surgeon - pada masa ini, operation Fundo tidak perlu. Alhamdulillah.

Tapi (ada jugak tapi nya) kalau lepas ni jeluok Afiq makin teruk dan berat Afiq tak naik, mungkin kena consider jugak.

 

Esok ni (Isnin, 02/04/12), ada appointment Kimi dengan speech therapist.

 

Wassalam.

 

 

Afiq sudah discharge

Assalamualaikum. Nk update sikit pasal afiq. Afiq dah discharge pada 7feb selepas 3hari dlm wad. Gembira sbb boleh discharge tapi kecewa dgn cara kes afiq diuruskan. Aku akan share dgn detail. Yg bagusnya, doktor dah suruh off oxygen afiq. Terima kasih semua atas doa dan sumbangan.

Update for Kimi & Afiq

Assalamualaikum,

Memang niat nak update every week, tapi tak sempat. Jadual 2,3 minggu ni memang sangat hectic.

Update Afiq

Sekarang ini keadaan Afiq tak berapa baik. Berat badan tidak naik seperti yang diharapkan. Afiq still jeluok lagi. Graf BMI pun menurun drastic. Berat masih tak sampai 5kg walaupun dah umur 6.5 bulan.

Baru-baru ni, gastrostomy button Afiq ada masalah. Susu keluar daripada button apabila Afiq meniarap. Nak consult dengan sister-in-charge, tak berjaya. Telefon, tak jawab. Message, tak balas. Tinggal voice mail, tak return call. Tak tahu nk mengadu kepada siapa.

 

Update Kimi

25 Jan baru ni, bawa kimi pergi jumpa pakar di HKB. Initial diagnosis - hyperactive and symptons of autism. Doktor pakar tekankan bahawa hanya symptom autism, bukan full autism.

 

13 Feb baru ni, bawa Kimi gi occupational therapy. Objective - behaviour modification. 1st visit, nampak OK; next visit is on 29th Feb. Daripada visit ni, pakar ada sebut 2 benda yang aku tak nampak sebelum ini -

1) Kimi dalam keadaan tenang bila naik swing (buaian) pada kelajuan yang perlahan. So, pakar tu suggest tu buat behaviour modification ketika Kimi dalam keadaan tenang. OK, will try that. Mungkin kena beli swing letak dalam rumah.

2) Kimi suka repeat benda yang kita sebut. Ini adalah cara dia belajar

 

I wont be surprised Kimi will excell academically in his studies. His memory is excellent. His observation is sharp. Sekarang ni dia dok sebut nama surah dalam Al Quran. His ability to learn by himself is

 

Feb & March are busy months, in terms of hospital appointments. Average appointments per week is 2, ada yang sampai 4 appointments. Disebabkan aku dah tak ada annual leave, kena distribute the appointments evenly supaya tak baca sangat kena potong gaji. Ada appointment yang mintak postpone.

 

Akan update lagi secepat mungkin.

Fw: Wrong method all this while !!

Assalamualaikum,

Pagi ni rasa kecewa. Why? Baru hari ni tahu, lepas tanya student pharmacist, tentang cara-cara nak ambil ubat Omeprazole. Ubat ni doktor prescribe untuk Afiq sejak dari kecil lagi untuk masalah clinical GERD (gastroesophageal reflux disease, atau bahasa kampungnya, jeluok susu), rasanya sebelum umur dia cukup sebulan.

All this while, misi suruh (tapi tak pernah pulak confirm dengan doktor) beri ubat ni sekali dengan susu. So, this instruction, we follow to the dot. And Afiq continued to reflux ('jeluok'). And then doctor increased the dosage. And Afiq still refluxed.

This morning, I was informed that this medicine should be taken at least 30 minutes before food. And when I googled the info on omeprazole, I found that the function and performance of omeprazole will be greatly impaired if the medicine is consumed with food in the stomach.

Wow!! So, all this while, we have been giving the medicine in incorrect method! So, okay, starting today, we will change to the correct method and see Afiq's performance. Thank you Izzati for the information.

Now, to think of all those experts (are they really experts?) in nursing (nurse, sister), pharmacy (regsitered pharmacist, PRP) and medical (HO, MO, doktor pakar, HOD paediatric), who gave me WRONG INFORMATION or who are negligence by not confirming that the parents comply to the correct method. The way I see it, negligence can be in 2 ways -

1) do it the wrong way, or inform others to do it the wrong way

2) does not do it (i.e. do nothing).

 

I'll update the status of Afiq using the correct method after 3 days

 

Wassalam.

Wrong method all this while !!

Assalamualaikum,

Pagi ni rasa kecewa. Why? Baru hari ni tahu, lepas tanya student pharmacist, tentang cara-cara nak ambil ubat Omeprazole. Ubat ni doktor prescribe untuk Afiq sejak dari kecil lagi untuk masalah clinical GERD (gastroesophageal reflux disease, atau bahasa kampungnya, jeluok susu), rasanya sebelum umur dia cukup sebulan.

All this while, misi suruh (tapi tak pernah pulak confirm dengan doktor) beri ubat ni sekali dengan susu. So, this instruction, we follow to the dot. And Afiq continued to reflux ('jeluok'). And then doctor increased the dosage. And Afiq still refluxed.

This morning, I was informed that this medicine should be taken at least 30 minutes before food. And when I googled the info on omeprazole, I found that the function and performance of omeprazole will be greatly impaired if the medicine is consumed with food in the stomach.

Wow!! So, all this while, we have been giving the medicine in incorrect method! So, okay, starting today, we will change to the correct method and see Afiq's performance. Thank you Izzati for the information.

Now, to think of all those experts (are they really experts?) in nursing (nurse, sister), pharmacy (regsitered pharmacist, PRP) and medical (HO, MO, doktor pakar, HOD paediatric), who gave me WRONG INFORMATION or who are negligence by not confirming that the parents comply to the correct method. The way I see it, negligence can be in 2 ways -

1) do it the wrong way, or inform others to do it the wrong way

2) does not do it (i.e. do nothing).

 

I'll update the status of Afiq using the correct method after 3 days

 

Wassalam.

Update status on Afiq

Assalamualaikum,

Sudah sebulan tak update blog berkenaan Afiq. Ada banyak perkara yang berlaku. Ada masalah yang tak masih tak sette. Letih!! Detail masalah/perkara/etc akan di update kemudian dalam blog ni.

Bagaimanapun, terima kasih kepada yang sudi visit blog ni. Dalam sebulan (sebulan yang tak update blog ni la), bila tengok kepada counter, sudah ada 200+ visits.

I'll try to update the blog at least starting from next week. Maybe on weekly basis.

 

Next week, 25th Jan, is date for Kimi's appointment with ENT dept at HKB. After that, I have to get appointment date for Afiq as well. Hopefully Kimi's problem of speech delay can be resolved starting from this visit. Cannot imagine him starting school (primary school) in 2014, but cannot express himself to the teachers and friends. Would be devastating. Although he is 'socially' still behind others, technically (academic wise) he is way in front of others. He's started to figure out reading simple words. Words that I or Ain have not taught him before. Imagine the joy when he's started reading some words in newspaper or magazine.

 

Wassalam.