Safwa's story 01 : is she what I think she is?

Salam.. 

There's something new happening in my life right now.. 

It's not really shocking to me much cause i was expecting it earlier.. 

It just got officially confirmed recently. 

So..rasanya nak tulis la pengalaman baru ni dalam blog. For memory sake of course.

Both me & Anwar are ok for public to know. Harapnya dapat memberi manfaat atau panduan kepada yang mengalami perkara yg sama. Also harap yg lebih berpengalaman boleh share with us.

My no4 child - Safwa, sekarang ni berusia 2tahun 2 bulan..and she doesn't speak.. yet. 

Safwa ni bukan la x bersuara langsung.. ada suara. 

Boleh ikut2/tiru2 bunyi/lagu2 kanak2 riang ria kt tv tu. Tapi bukan bercakap secara ayat penuh atau real simple conversation. Contoh, bile nak susu. Instead of saying " nak susu" she will either cry or bring us to the susu area or ambil bag susu. 

Bila kita bawa anak untuk vaksinasi, kalau guna buku check up anak yg dari Klinik kesihatan/ kerajaan, setiap kali check up ade check list yg perlu diisi oleh ibubapa & nurse/doctor di klinik. 

Check list ni la yg memantau perkembangan anak2, samada mengikut usia yg sepatutnya atau tidak. 

Perkembangan yg dipantau adalah motor kasar (gross motor), motor halus (fine motor), percakapan (speech & language) dan keadaan sosial/interaksi (social behaviour/ self care/play). 

However, kalau guna buka check up swasta, biasanya buku tu very simple & ada list untuk vaksinasi & graf berat/tinggi/lilit kepala/bmi anak sahaja. 

Since I'm a primary care Gp doctor, vaksin anak2 I buat sendiri je la. Bile bagi vaksin tu, check skali perkembangan mcm dalam buku KK tu.. Masa syndrome anak pertama je gigih pergi bawak jumpa paeds. Bukan sbb anak2 lain kurang kasih sayang ya.. Never like that. 

x suka or maybe takut bila org nyanyi lagu bday

Jadi, i started to notice something mcm x kena pada Safwa ni since usia die dalam 12-14 bulan. Time tu die cakap mcm kartun? hahaha bukan cakap la.. bubbling/mumbling.. mcm tu la. 

Arahan pon mmg die buat x layan je. Patut pada usia mcm ni, budak2 biasa dah faham sikit arahan2 simple. 

Sehingga usia Safwa 18 bulan ( setahun setengah) I suarakan my worry to my husband. Well..Ortho surgeon kan..kene polish semula la bab2 undergrad punye topic ni.. hehehe 

But then we both continue to observe Safwa in more detail. 

We did try to teach her to say simple words. Mama & Papa tu kadang2 ada la die sebut. 

Occasionally ade la 1-2 perkataan yg ade makna die sebut.. tapi jangan harap la nak ulang.

Main pulak, die lebih suka buat hal die sendiri dari join Sofea & Sarah. Kalau org x kenal die tutup mata terus 😅

When Safwa reach age 2, progress dari segi speech dan social dia still x improve. We told our parents & beberapa org yg rapat.

Ada yg kata Safwa ni berat mulut.. malas cakap.. etc. 

Ada yg cakap " ehh anak aku pon sama dulu masa umur mcm ni.. jgn risau. nanti besar sket ok tu"😂

Well.. maybe lebih nak menjaga hati kami.

Perkara mcm ni kan boleh jadi issue yg sentap. Tapi kita org x terasa pon.

Lebih senang berterus terang supaya orang sekeliling berlajar untuk faham. 

Maka, misi pencarian Developmental paediatrician pon bermula la. 

Pada masa yg sama kami buat appointment dengan Paeds team Hosp UPM juga - Hospital Anwar bekerja sekarang.. Appointment kt UPM ni ntah berapa kali reschedule ntah.. papa tibe2 ade meeting la, Ot la, mama kene operate buang batu la..kesian Safwa.

Bukan senang rupanya nak buat appointment dengan Developmental Paediatrician ni..

Di Hospital kerajaan ada.. tp faham2 la list patients pun panjang.

Di area KL-Selangor ni ade 6 saja (yg terkenal & recommended by many)

 1) Dr Rajini di Park City Medical Center - paling awal appointment adalah 3 tahun ok 😒

 2) Dr Raja Juanita di Pantai Hospital KL & ReGen Rehab Hospital PJ.

 3) Dr Cindy di Sunway Medical Center Subang Jaya

 4) Dr Ranjini di Prince Court Hospital

 5) Dr Subashini di UMMC

 6) Dr Juriza di HUKM & Avisena Hospital (once/month visiting)

I called semua 6 clinic ni kecuali HUKM & UMMC - which i dont expect they can give appointment soon enough. 

ParkCity earliest date will be in 3 years time.. hahaha serious! 3 tahun ok.

This I call clinic tu sendiri tanpa bantuan org dalam or VVIP pass ( mcm la ade kan? haha)

Then Pantai Bangsar, Avisena Hospital, Sunway Med Center & Prince Court semua bagi date in August 2021.

Which is next 6 bulan baru boleh jumpa.

They suggested me to get assessment by clinical psychiatrist  first then start the therapy needed while waiting for the appointment date. 😔

Lucky me (Alhamdulillah) I tried call ReGen Rehab Hospital - which I pon 1st time tahu ade hospital ni di PJ & they give appointment with Dr Raja Juanita in 1 week time..( she has clinic here every Friday).

So here we go! 

in HPUPM Paeds clinic

19/2/2021 - met with general paediatrician Dr Sithra in HPUPM. Almost 2 hours consult..

                   Impression : Expressive Speech Delay & Social Delay

in ReGen Rehab Hospital 

26/2/2021 - met with Dr Raja Juanita in ReGen Rehab Hospital for almost 3 hours.

                   Diagnosis : Development Delay with features of Autism.

I think, the momment we decided to see these paeds, we know its going to be a long journey to go.

A new adventure for both me & Anwar. 😉

There will be multiple therapies to help Safwa ..

Also still, we have another 3 growing up kids that need same special attention at the same time.

Do I feel sad? Its hard to explain the feeling for now. 

But I think I'm calm enough.

And I am ready. 

Please dont pity me or Safwa.. just pray for us ok!

Bring it On baby!!

Till then, xoxo.