We are back!

Adnin and Aqilah with their Grandmother

Now that we are here already in our beloved home country, I decided to unhide this blog so that friends and families with get an update on Adnin and Aqilah' progress. I have abandoned their webpage mainly because I was concentrating on my other important chapter of my life; being diagnosed with breast cancer.

The kids are doing alright since the last posting. They are now embracing Ramadhan; although they are small in size, we still train them to fast and so far they are really doing great. Aqilah has full days of fasting while Adnin has missed one day because she was sick. Luckily the fasting time here is shorter compared to the UK which makes training them to fast, an easy job. I wake them up for sahoor around 5 am, feed them well so that they can stand it during the day. Luckily the weather is not that hot and since they have not gone to school yet, fasting is an easy task for them.

First day of Sahoor at their auntie's house

The breaking of fast is around 7.15 pm here. They eat and drink like crazy during Iftar. I guess everyone does! I'm really happy to see their appetite. We all go to the mosque for tarawih prayer and soon after the prayer, we have light snack like porridge, fried mee, and malay kuih like curry puff and so on. Adnin and Aqilah really enjoy the food.

During this Ramadhan, I'm taking the opportunity to pray that we will come across medication for Adnin and Aqilah as I believe that for every sickness there is a cure, Insya'Allah...

The bandage is off!

Adnin had an appointment with the doctor this morning. At last, our curiosity on how the scars look like has been answered. I didn't expect that the cuts were that long! No wonder it took around two hours for the operation. I thought it was just like 2 cm per insertion of the eight-plate. In actual, the doctor cut a whole stretch as per photos below. Anyhow, the wound healed nicely, no infection at all. Could it be because it's cold and the bacteria is not active? Or could it be that the bandage they use are very good that the bacteria could not penetrate into?


Adnin is a very brave girl. The plaster sticked really well that it needs to be soaked for a while in order to be removed. I know it was really painful to remove it but Adnin just screamed for a while. Aqilah couldn't watch it and she covered her face with her hands. I myself felt like wanting to pee!

Enough for the trauma, the doctor said Adnin is ready to resume her daily life; next week she can go to school but no PE just as yet for the next four weeks. She will be seeing the doctor again in three months time; probably will have to go for x-ray to see if there is any improvement. After all the trouble that she has gone through, I hope there will be some improvement...

Adnin is recovering well

Adnin has a really speedy recovery. She can now climb up the stairs by herself. This morning I guide her to climb up the stairs using her buttock. I came out with the idea as she usually climb down the stairs using her buttock. And guess what, it works although she was struggling to climb up!

I had the time to edit some pictures from my Nokia 6630 snapshots. Here it is...

She is still enjoying herself out of school for another week. Next week will be a school holiday - mid term break. She will be seeing the doctor on the 16th Feb, 2009. The doctor will probably take off the bandage (everyone is curious on how the scar looks like). And once the bandage is off, she can go back to school. How does she fill in the days at home? What else - TV, matheletics on the computer, and Nintendo DS, the best present she got for her ordeal...

Adnin is recovering at home...

Adnin has been discharged last Friday. She can now walk a few steps with the help of a walking frame. This is how she looks like with the walking frame. Courtesy to Aini who edited the photos.

Aini, Adli and Aqilah did not get to go to the hospital to visit. They were very excited to see Adnin back home. Some snapshots of Adnin on her bed (supplied by the hospital).

Some snapshots at the hospital. It was really comfortable; even I got my own bed to sleep at night with fresh bedsheets and pillow every night! Food is also alright, we have halal food for lunch and dinner.

Some friends came and visit and brought goodies for Adnin.



These two shots were during the 2nd day after operation. She was still under morphine - continuous drip; the side effect of it, she vomitted out everything that goes in. But after she was given the anti-sickness medication orally, she was ok.

Adnin's ordeal to correct her knocked knees...The day after, she said to me, "tak straight pun". It's going to take around a year to see the difference.

It's an experience for me to stay for three days at the hospital. Of course I dreaded it but it's good for Adnin. The best part is IT'S FREE...

At the point of writing, it's snowing outside; poor Adnin with her bandaged legs, she wouldn't be able to enjoy it. Maybe when the snow is really heavy, we will pull out the wheelchair and let her enjoy the snow...

Adnin is in OT at this moment...

The time has come for Adnin's knee operation. We got in at ward ED34 at around 10.45am, waited for awhile at the play room for the bed to be ready. She is placed at the space bay bed 3. At around 2.40 pm, she was pushed to the operation theater. I sent her until they put her on anesthetic, kissed her and here I'm at Greenfield library of QMC. I hope everything will go well and Adnin will have her straight legs as she wishes...

I'd better get back to the ward as it is quite a long way to the east block. The hospital is so huge!

Hospital bed for Adnin

The occupational therapist called this morning to inform that they will send in hospital bed for Adnin for her post-operation. Our dining room will be turned into a recovery room then. Jane was asking whether she might need a commode. What is a commode? I've never heard of it before. Well, it's actually a movable toilet so that Adnin can easily "does it" at the room. But knowing Adnin, she might not be able to do it there. So I told Jane that she might not need it. Besides, our toilet is quite near for me to carry her when she needs to go to the toilet.

It's amazing to see how they treat patients here which we can never get in our home country. I remember when my mother had her total knee replacement operation, I bought a new bed for her to ensure that she is comfortable. Well, it doesn't take long for the return favour, as somebody else is doing for Adnin when she needs it...

Rare diseases translated as "penyakit jarang jumpa"...

My husband was reading Malaysian news this morning over the Internet and came across the news about "penyakit jarang jumpa". According to the article, 1 out of 4,000 birth in Malaysia is having these diseases. Wow! That many? This is not rare anymore, isn't it? The kids' disease is one of the categories of the rare diseases, caused by metabolic disorders because of the lack of enzyme GALNS (is short).

In the article, Dr Juliana Lee admits that the treatment for this kind of diseases is very expensive. Adnin and Aqilah are lucky to be here. They are about to test the ERT for MPSIVA during the first quarter of 2009.

Actually we have met Juliana when we were there. She infact has invited us to join the rare disease group in Malaysia. When I go back, I sure will. After all, I can share the experience I have here with the UK MPS Society. It's a very strong organization and very influencial too.