Dilemma

4 days of long leave was well spent- at home :) 

(Padahal hati meronta-ronta nak sangat pergi ke mana-mana. Wanted to be off home itu sahaja. Apekah baru cuti beberapa minggu dah tak keruan kah dok rumah. Sigh )

Bukan itu.. Cuma kadangkala rasa penat sangat. No joke. Penat gila okei duduk rumah. Aku rasa kerja kat opis lagi relax. Seriously. You deserve my highest respect lah emak-emak surirumah sepenuh masa. Wa caya sama lu.

Lari topic. 

Alhamdulillah Aryan is getting much much better. He is a strong boy despite the difficult situations he had to go through. His seizures now almost disappear and we already off him from medication for about 2 weeks. I mentioned almost disappear because sometimes kalau dia terlampau stress, ada bunga-bunga macam nak jadi seizures juga but I would immediately alihkan focus dia and Alhamdulillah nanti tak jadi lah fit itu.Cuma his usus yang masih sakit. Sangat-sangat sakit pada waktu petang dia kata, Masa tu dok merengkot macam udang badan dia menahan sakit. Allahuakbar. Rasa I fail to be a mom because when he complains sakit perut the most that I could do is gosok perut dengan minyak. Sambil hati berdoa sungguh-sungguh Allah angkat segala kesakitan yang dia rasa. During our last follow-up visit with Dr Faizel, he said the effect of SJS could last for 2-3 months until complete recovery. Kegilaan apakah sampai 3 bulan weh?

Btw, currently kami sedang menjalani 3 rawatan alternative. First is Accupressure, Second is rawatan Islam As-Suffi, Third is using Essential Oil. All in parallel. Alhamdulillah we are seeing significant positive results and improvements, Alhamdulillah syukur Ya Allah.

With this experience, again aku memang dah skeptical dengan medication yang Aryan consume. Dalam kepala otak dah set yang his body akan ada intolerance with most of the medications. Dah 2 drugs did not work on him, what else do I want to expect from the rest? Thanks but no thanks. Like seriously, kalau happen to anak-anak awak sekalian, I bet you will feel the same.

Dalam pada masa yang sama, I feel pity for Khalif. Dia macam sangat kekurangan kasih sayang sebab I have to focus more on Aryan. And sebab kena and almost wajib menjaga emosi si abang, adik kena beralah all the time. Several times yang Khalif baru nak breastfeed, bila Aryan nampak dia jeles. Terus merengek nak mommy pakaikan baju, mommy Aryan nak shi shi and whatnots. Once he started merengek, that means it's now now now. Maka terpaksalah pujuk Khalif utk breastfeed kendian. Tu belum masuk bab kalau tgh dukung Khalif, tetiba Aryan nak dukung jugak (which means no sharing), and terpaksa letak Khalif dulu. Dan bab barang-barang yg mmg tak boleh nak share. Everytime things like this happen,aku memang menangis dalam hati terkenangkan si adik. Dengan muka kesian dia, air mata bergenang lagi.. Haih. We have to really work on their bonding. Which is part of the therapy anyway. 

Full story of our experience aku tulis di sini. I found it very hard to get info/sharing pasal seizures & epilepsy on the web (in Malaysia context). Tak ramai yang willing to share. That's why I decided to create a specific blog to evidence our journey on this. Hopefully it will create awareness and also help other parents yang clueless macam aku masa mula-mula gone through this. 

Till then. Nyte.