Assalamualaikum w.b.t
Lama amik masa nk share stori kat blog ni..al-maklum la byk kekangan kalah PM..hihi
Today rasa perlu juga nk menulis dlm ni..moga ada kebaikan utk org lain yang terbaca or tgh cari input & at same time knowledge & kenangan utk diri sndri juga.
As per title, me agak pelik y ank sulung, muhammad fayyadh x bole panjat tangga like normal mcm his sister..now dia dah 5yrs 9mths..dia panjat tangga both feet on stairs then onli climb up..biasa kte panjat 1 tangga 1 kakli kan...bole imagine x keadaan tu??:P
Me & husband decided seek specialist bcoz nx yr dah nak masuk primary school.
So, tentatif cerita bermula:
14th July 2017, klinik hana, nilai
Cerita la serba sikit sebab musabab pegi klinik..doc pon panggil physio utk check..fayyadh buat catwalk sikit & demo naik tannga..doc said ada masalah ligamen dekat knee..tp utk further details kena buat xray..memandangkan insurans x cover sebab kata nyer congenital illness so i minta doc buat refer letter ke hospital pjaya. Done refer letter then pulang.
1st August 2017, Hospital Pjaya
Awal pagi dah sampai hospital..ramai amat..parking pon susa..apa bole buat rakyat marhaen..maaf nak mama papa x berkemampuan nk pegi specialist kat private..melalut la plak..hihi..so dpt parking semua then proceed register utk jumpa pakar tulang..mula2 kena soal siasat la dgn HO,then dia agk blur dtg plak senior MO,but stil xtau apa yg membuatkan fayyadh punya pergerakan camtu (after all d catwalk..hihi)Then dtg la specialist..dia minta fayyadh cangkung..suruh bangun terus la x bole..dia cuma bole bangun dgn bantuan..so doc suspect masalah hormon..dia terus buat refer ke pakar kanak2..so kita pegi ke klinik kanak2 plak..doc minta buat catwalk lagi..and ada amik blood juga..since blood report x bole dpt on same day so doc set 3hb utk review blood results.
3rd August 2017, Hospital Pjaya
Mcm biasa awl pagi dah sampai..cari parking & proceed register..sekali nk pingsan tgk caj bil RM 465..org kaunter pon terkejut tgk amaun tu..rupanya sbb we olls bwk refer letter dr private klinik so dia caj dat amount without subsidi langsung..PANAS HATI..tp stay focus anak nyer pasal xpela kita ikhtiar duit kemudian..after long time waiting then masuk la jumpa doc Aliza Ismail..Dia x cakap byk tp cara ckp mcm ada benda x kena..i can feel it..naluri ibu kot..agk lama dia soh fayyadh catwalk..buka baju seluar telek kaki tgn..then dia ajk we olls jumpa specialist..doc Rashdan..he pon cerita pasal blood results..creatine kinase too high 17,800..so he cakap dis is sumtin..me dah berderbar tahap ape..tp stil control..x bole fokus sbb farha & fayyadh dah buat perangai..yela dr pagi lagi kn..try hard utk concentrate..doc ckp fayyadh ada masalah otot..life span antara 9-12yrs old..max 20yrs old..usually, kematian due to heart problem (jantung pon ada otot kan...)me dah rasa melayang ke mana..mcm batu besar hempap kepala..mata dah berkaca..but stil under ctrl..doc ckp akan refer paeds dekat HKL since sana je ada kepakaran..keluar je klinik terus la menangis bengkak mata 3 hari 3 mlm...sob sob sob
Sementara tunggu apoimen kat HKL, we olls start la cari info berkaitan penyakit tu..duchenne muscular dystrophy (DMD). Antara yang sempat gugel:
Byk sgt info yg dapat..setiap kali baca mengalir je air mata..x terlintas langsung ank yg dikandung & lahir sihat tubuh badan akan mengalami nasib sebegini..tp me cuba positif..hadam segala info sambil berdoa kepada sang pencipta memohon diberi kekuatan utk deal dgn dis situation..as of today fayyadh alhamdulillah stil a strong boy of mine.
5th August 2017, HKL
Pagi lagi kitorng dah gerak..1st time in HKL..besar amat..xtau nk pegi mana..mcm rusa masuk kg..hahaha..but we managed to find Institut Pediatrik..jam 11.30am baru dpt jupe doc..start again story telling..catwalk..and doc impress bcoz we olls x nmpk sedih takut & wut so ever..actually, deep down my heart hanya ALLAH yg tau..so doc x ckp byk cuma dia ada bg input sikit & bgtau plan utk fayyadh..doc amik darah utk genetic studi..results dlm 3-6 bln..apa nak buat..HKL je yg bole buat test tu for free..so tunggu la..results tu utk confirm kan betul ke fayyadh kena DMD sbb simptom mmg positif DMD la..doc bagi prednisolone (sejenis steroid) utk prolong pergerakan fayyadh..and she did mention side efek steroid juga..but we have no choice bcoz its d only medicine now..cannot cure..just to prolong..then doc minta we olls set apoimen utk mata, jantung & genetik consultation. Next apoimen 28th november 2017..hope in dis 3 months fayyadh tolerate well dgn steroid..#prayforfayyadh semoga ada keajaban utk ank syurga
Ok then, will update in 3 months time :)
Alhamdulillah...br ada peluang nk update perkembangan fayyadh..
Appointment 28 nov 2017 wif pakar mata...GOOD
Appointment 7 dec 2017
Alhamdulillah...br ada peluang nk update perkembangan fayyadh..
Appointment 28 nov 2017 wif pakar mata...GOOD
Appointment 7 dec 2017
- wif cardiologist....GOOD
- wif neurologist.....GOOD
