Congenital Scoliosis Hemivertebra Excision Part 2

How Aisha's Spine Looks Like (Image from google).
The 2nd one : Complete unilateral failure of formation.

Image from google

Fortunately Aisha has all her lumbar bones. That means there was one extra piece of bone? What a bless? Because of that hemivertebra, her spine could not grow normally and would affect other organs development as she grows.

Even though I knew that:

"Congenital scoliosis is a sideways curvature of the spine that is caused by a defect that was present at birth. It occurs in only 1 in 10,000 newborns and is much less common than the type of scoliosis that begins in adolescence"

But deep in my heart I always asked myself what did i do wrong? What did i took during pregnancy? Something I ate? Any external factor? Supplement? Age factor maybe?
Dr said it just random. Just being 'lucky' to be selected by Allah SAW. As Muslim we redho and believe there are always something good behind the worst situation.

One more thing: No Insurance would cover for congenital sickness. Yeah....The operation cost was very expensive. Yes even though it is a government hospital, we are not government servants so we had to pay by ourselves. I think government servants still has to pay but will get discount. What we were paying (that costs so high) was to the supplier. For the hospital services,  there would be some charges but it was very small compared to if you chose private hospital.

Image from Pinterest

There are four types of scoliosis. The common one is idiopathic scoliosis. You must be aware of your spine curvature or your kids alignment. Please be alert. For CS, only operation is an option.

Congenital Scoliosis Hemivertebra Excision Part 2 BM (coming soon)

Congenital Scoliosis Hemivertebra Excision Part 1

Aisha and congenital scoliosis BM

Congenital Scoliosis Hemivertebra Excision

History, how do we knew/detected it in the first place.

It was in 2015 my daughter was just 4 months old. My husband felt something like a lump at the below back/spine (lumbar area). I was frantically worried at that time. What was is? Tumor? Cancerous? Something bit her? The lump was hard just beside the back bone. I was optimistic the lump would go away.
It wouldn't go away! So we decided to visit pediatrician at private hospital. They did x-ray and MRI scan. Doc said there was a mass at the spine. He said this case was not his specialty and advised us and also referred us to general hospital. We were in Kulim at that time. So we went to Penang General Hospital. There were specialist(s) in child spine there who turned out to be our neighbor (one of). He is a 'datuk' very kind and humble guy.
Aisha was just a baby at that time so the doctor just monitoring her every 4 months. If she could move by herself, started to turn? able to crawl? able to sit? walk? Just monitoring the phases. Alhamdulillah she progressed normally. Like not affected by 'it'. Sometimes I forgot about 'it'. Whenever I remember the possibilities of what could happen? I cried. I tried my best not to overthinking.

2016, we moved to the city in Selangor so we referred her case to local hospital here. Just normal follow up. Until early 2018 she was 3 years old docs asked her to undergo ultrasound to find out if any of her internal organs affected. Alhamdulillah everything worked normal as normal kids. Even though I thought her belly was a bit bloated. No issues, just gasses.

Then we went though CT Scan and MRI to find out if operation intervention is possible.
She has to be warded, sedated for that.

Alhamdulillah during the next meeting with doctor in HKL, they said they were able to remove the wedge but need to secure the spine with screws and she has to be in cast for about 6 months.

I was not sure my feeling after that outcome. I hope that she would not got through any operation. How ever I did feel relieved that the wedge was (quite) far from the nerve and the complications and risks were minimal. Only the risk of infections were to be worried.

Aishastory dalam BM

HS Encounter part 2

Banyak aktiviti yg kami join tahun 2018. Antaranya, menyusuri Sungai, River Scientist, herbalist, book club, Exibition and so on so forth. Yg penting, mak kena rajin. Mak terpaksa rajin demi anak ye.

Tapi..... Saya tengok keadaan dia macam makin teruk. Saya ingat dia akan relax bila bebanan nak ke sekolah tu tiada. Harapan saya untuk tengok dia bercakap dengan kanak2 lain macam tipis.

Saya risau.

Dia, bila jumpa budak2 lain memang dia berdiri belakang saya saja. Pegang tangan. Geleng2 kepala dan nervous sangat. Tak cakap langsung. Kadang2 saya jadi fed up dan nak marah tengok kelaku dia. Nak ketuk ketuk luku luku je kepala tu dalam hati ni la....
Nak jerit kenapa hg macam ni haa?

Memang malu. Selalu kena explain kat ibu2 lain kenapa anak saya mcm ni.
Adiknya Aisha pun ikut. Dia pun mcm terikut dengan perangai kakak.... Stress gila. Cerita kat husband. Dia kata buat la apa nk buat. Dia dah fed up. Senang je dia fed up.... Tensen tau bila fikir. Semua atas kita je. Nangis saja saya bila sorang2. 😭😭😭😭😭😭

Sebagai org Muslim mestilah saya doa ... So saya sgt hangat hati bila org suruh saya doa. Tu yg malas nk cerita kat soc med. Semua tak faham masalah saya ni. Ramai yg kata nanti oklah tu... Anak dia pun mcm tu.... Huhuhu. Tak.. Anak kita tak sama 😭😭😭

So saya fikir2, tak boleh jadi ni. Kena ada intervention. Saya perlu proper diagnosis untuk anak saya. Takmau pi jumpa 'pakar' duit habis tapi takde diagnosis. Yes it is very important to me. Sebab I tau dia ada sm tapi takde diagnosis macam mana?

So kawan suggest pi satu center kt kajang... Mcm Islamic la. Yg sebelum ni tak... Budaya pun tak sama. Susah. Buat appointment. First session rm600 tak silap. Hangus dibuat ya 😧😱😔😑

Tapi takpe demi intervention dan diagnosis saya korek tabung haji. Laki tak cukup duit untuk belanja di luar budget. Semua family members kena hadir mcm biasa sebab dia nk rule out mcm2. Biasalah selalu budak trauma mesti ada sebab.
Ada psycologyst terus aim mak bapak sebab kes dia selalu berunsur seksual.... Kena pandai pilih psycologyst la. Cek dulu background dia. Memang sesuatu yg saya tak suka bila kena cerita masalah lampau sampai tahap masa pregnant. Kalau boleh taknak lalui sesi ni lagi.

Mcm2 test la. Banyak yg kena jawab soalan questionairs tu. Biasa ya. Adelina pun kena jawab secara bersendirian.

Dia tak bercakap di center tu.

Akhirnya dia di diagnose dengan memang saya tau dah iaitu selective mutism. Dan dia berada di tahap yg tinggi. Jika tak rawat mungkin dia akan kekal macam tu. Dia kena pi sekolah semula...

Tensen saya bila dengar kena pi sekolah.

Dan kena buat terapi. Rm200 per hour. Terberak lagi.... 😔

Tbc.

Sepanjang homeschooling 2018

Hs encounter part 1

Selepas Adelina berhenti sekolah April 2018, cita-cita saya terus nk start homeschool.
Homeschool?
Tahu tak susahnya nak homeschool...hs lah singkatannya. Tambahan untuk org yg takda plan. Memang macam meraba dalam gelap. Total darkness.
Nak start dari mana? Nak ajar apa? Silibus apa? Periksa macam mana? Nak ikut darjah 2 silibus ke? Sampai overwhelmed saya dibuatnya. Asyik gugle gugle sampai back to square one. Takda progress. Taktau nk start dari mana. 😭😭😭😭😭😭😭. How I wish she is just a normal kid just go to school to learn.
Oleh sebab ada kawan yg hs, dia suggest untuk join group fb. So saya pun request lah untuk join Homeschool tribe Malaysia.
Terkejut saya banyaknya yg hs. Sebelum ni tak tau kewujudan hs ni. Dunia yg terselindung tapi it's fun.
Dari group tu, saya kenalkan diri. Kenapa saya pilih hs anak saya. Time tu saya nk jumpa orang yg berdekatan untuk buat playdate.
Syukur ada yang reply. Semua sangat supportive.
Bila dah buat playdate, saya pun diperkenalkan dengan group yg berdekatan. Jadi bila dah masuk group maka adalah support untuk saya. Bersyukur sangat time tu...... Saya pun dapat jumpa kawan baru saya yg memilih untuk jadi sahm, housewife walaupun educated. Macam semuanya dirancang Allah.

Wah! Lama tak update entree

Assalamualaikum semua.
Punya sibuk sampai tak sempat. Tambah pula dengan saya punya gugle adsen akaun kena tutup. Hoi frust tau nak tulis pun takda mood. Dari tahun lepas (2018) duk appeal tapi nampak macam takde tindakan dari pihak gugle.
Sekarang saya dah create baru. Tunggu aproval. Kalau dapat baru saya cerita macam mana nak buat tu.
Banyak sangat cerita nak cerita.
Ok Assalamualaikum dah salam sejahtera,

Wajah terbaru makcik dengan anak bongsu.. Tahun ni naik taraf jadi makcik.

Update...
Malangnya adsense tak aprove.
Jadi, saya akan tulis dengan ihklas, bukan sebab duit iklan....
Sedih. Frustrated.