Pengenalan Diri

Sebelum saya meneruskan tulisan di dalam blog ini. Izinkan saya memperkenalkan diri saya dan anak tunggal saya. 

Inilah keadaan kami berdua sebelum Jesie(anak perempuan/anak tunggal) saya sakit. Gambar ini di ambil, bulan June 2011.

Jesie dilahirkan masa kandungan saya dalam usia 35 minggu. Boarder Line Pre Mature Baby. Dengan berat badan 3 kg. Dua minggu ditahan di hospital kerana paru-parunya belum cukup kuat untuk memproses gelembung udara.

Perkembangan Jesie seperti kanak-kanak lain. Tiada banyak masalah dan dia adalah anak yang bijak. Semasa umur 4 tahun, dia sudah mahir bercakap dalam 6 bahasa (Iban, Punjabi, English, BM, Mandarin dan Tamil).

Namun, kegembiraan itu tidak lama... pusingan roda yang di atas berpusing deras sehingga menyumbat Jesie ke dasar yang paling dalam sekali. Itulah, takdir perjalanan Jesie yang telah ditentukan oleh Tuhan sebelum kelahirannya lagi.

Saya dan suami sebagai pengalas akan beranggungjawab sepenuhnya terhadap nasib anak. Akan berusaha selagi terdaya. Tiada sesalan, hanya berlandaskan keredhaan dan ketakwaan kepada dugaan yang maha besar ini.

Proses penulisan kisah Jesie mungkin akan mengambil masa yang agak lama. Kerana blog ini... akan saya sumbangkan kepada setiap individu yang sama senasib. Untuk dijadikan panduan dan mempelajari perjalanan hidup Jesie.

Di mana ia, merangkumi..

1) Sebelum Sakit

2) Semasa Sakit

3) Pemulihan

- Bangun melawan kesan Hemispherectomy selepas proses memberhentikan serangan sawan. 

- Penulisan akan saya lakukan sepanjang hayat. Selagi nyawa di kandung badan. 

- Penulisan akan diteruskan oleh Jesie sendiri (suatu hari nanti... dengan izin Tuhan)

- Atau akan saya serahkan kepada penjaga terdekat Jesie. Itupun kalau ada yang sanggup menulis, menyambung usaha saya.

Niat saya satu sahaja...

- Blog ini adalah sumber rujukan kepada ibu bapa kanak-kanak Rasmussen Encephalitis. 

Dari masa ke semasa saya akan selitkan pengalaman harian yang mengujakan atau jalan buntu yang ditemui. Setenggah tulisan akan ada dalam bahasa Inggeris. Mengikut kesesuaian mood saya pada ketika itu. 

Tetapi cerita atau tulisan secara mendalam akan saya lakarkan dalam Bahasa Malaysia.

Kenapa? 

- Sebab saya percaya semua Malaysian celik Bahasa Malaysia. 

- Memudahkan individu yang tak berapa fasih berbahasa Inggeris. 

- Saya nak apa yang saya tulis bukan sia-sia sahaja. Tapi membawa manafaat kepada semua. 

Salam perkenalan dari kami sekeluarga. Kalau ada sebarang pertanyaan boleh tinggalkan pesanan di ruang komen. Ada masa saya akan reply secepat mungkin. 

Sekian. 

Dave, Asiah dan Jesie.

My Journey With Jesie - Therapies

Just came back from night shift. Wake up at 12.30 pm. Send Jesie to Penang GH for her Therapist Appointment.

Today Appointment

1) 2 pm Occupational Therapy
2) 3 pm Hydro Therapy

Life is ain't easy everyone. It's hard. You need to push yourself, to the maximum point. With a little bit of courage and support. Yes, you can!

Come back to my home and need prepare myself to go to work at night shift again... <3

♡♡♡

As usual whenever it's an other appointment, outside from Penang Spastic Centre, Jesie wouldn't go to school.

Her's health, will be place as number 1 conditions. Doesn't mean that school is not important. But, expose her for longer hours without enough time for her to rest. It's will make her exhausted... I don't want her to feel tired.

As this journey is a life time journey! Bored and exhausted!

But fill with love and joy... learning, adaption and applying.

♡♡♡

Hydro Therapy session.
- A big clap hand.
- Jesie is walking in the swimming pool today... yeaaa

9 months past, she cannot move much. So we decided to stop Hydro Therapy treatment. We focus on Physiotherapy at home and Spastic Centre.

Today she surprising everyone in the pool (people who know her past 9 months).

"She is walking!" Everyone happily shouting in the pool.

Nothing else I would like to say... She is a bless young lady.

Thank you God, for blessing us in every way...

Occupational Therapy
- As usual, Jesie is cooperate with her's Therapist.
- Jesie show her how to undress and dress up independently.

"In this case, Jesie surely can be independent in future. She able to understands and she will do it." Therapist expressed her feeling.

Photo attached.
Jesie and Kakak (who taking care of Jesie during I am not at home. She did a great job. Learning the therapies skill and apply it.)

My Journey with Jesie

If there is anyone been diagnosed here with EPC (Epilepsy Partialis Continua) trio to Rasmussen Encephalitis (1:1 000 000 case in this world).

You may look at my daughter case.

Jesie is about 13 months post Hemispherectomy.

1st attacked when she was 4 years old. No fever. Healthy toddler.

Than the twitching and jerking movement started at right side of her body. Non stop. 24 hours a day for 23 months. To nail it down... Hemispherectomy is the answer.

The surgery was successful... She is 13 months seizures free! Still on Tregettol 5ml twice a day. Out of 5 AED towards to her surgery.

We are decreasing Tregettol slowly... hopefully by end of this year she will AED free too.

Life without seizures and AED is awesome. She is cognitively and lively. Her awareness, coordination and learning skills is improving aggressively towards the dismissed of her's AED.

She is able to walk with support, by holding one hand at this point.
My points is... if there is a parents been suggested for an epilepsy surgery to improve your child daily living or future living. Jesie is one who made it tremendously!

Even, my journey with Jesie after the surgery will be more rough, but we are prepare well enough to battle it down. Just like we fight to get rid of Rasmussen Encephalitis.

Here I attached of Jesie's Photo towards on her surgery and current status.