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.

Adnin is due for knee operation in January...

We had an appointment with the doctor at Queen's yesterday and Adnin's knee operation will be held on 27 January, 2009. The anesthetist met Adnin yesterday; asked her if she could move her head to the sides, up and down, open her jaw wide, and stick out her tongue. Adnin managed to do all these without any pain and it proved that her neck is stable and she is able to undergo the operation. They really have to be careful with Morquio kids on anesthetics as their windpipes could be small which could cause complications during operation.

The knee operation that Adnin will undergo, is called an eight-plate procedure. What is an eight-plate procedure? It's actually a small plate in the shape "8" that the doctor will screw it to the bone to depress the growth plate on the inner side of the knees (as Adnin is having knocked knees). It is hoped that by depressing the growth plate on one side, the other side will grow and the knees with get straight by themselves. After the eight-plate is implanted, she would need to be assessed every 3-months to see the improvement - her height hopefully will improve. Since she is due to receive the clinical test for the ERT, hopefully the 8-plate procedure would work and Adnin can have her straight legs! Usually it will take 6 - 18 months to see the effect. If it works, the eight-plate can definitely be taken out.

I read through on this 8-plate procedure over the internet, and it was a success. Just pray that it would work on Adnin.

The kids have appointments on the 29 Jan, 2009, to see whether they need wheelchairs. They will instead have the appointments on the 26 Jan, 2009 as Adnin might need it after the operation before she can fully walk again...

Update on yesterday's check up

We went to Birmingham again yesterday. Thanks to Sanya & family for taking us there; saved us the hassle of going there by train. And of course, save my precious Pound for I would have spent around GPB30 on transport alone. It was raining yesterday at Birmingham and I could imagine how bad it would have been, having to push the stroller in the rain and not forgetting the cold!

We left at around 12.30pm as the morning appointment with the dentist was cancelled. It went smooth; we registered at the outpatient and soon after, the kids got called for measuring their weights and heights. We then get to see the doctor and his team; all the familiar faces that we have seen before.

I'm very pleased to hear that Birm will be one of the centres that will get to try out the Enzyme replacement Therapy (ERT). Adnin and Aqilah are included and next month we would have to go there again for the preparation. They would have to do the walking test and have to be measured again. Just pray that there will be a significant impact of the medicine and the kids can grow as normal.

As per Adnin's knocked knees, the doctor at Queen's have contacted the doctor in Birm and Adnin is due for the leg operation soon. Her legs have gotten worse and she could not walk that far. Usually I would have to carry her back from school. Luckily she is just 14kg! But the occupational therapist said it would be bad for my back having to lift her often. I really hope the the buggy that she is recommending for Adnin would materialise so that I could just push her to and from school.

As for Aqilah, the physiotherapist at Birm would contact the physiotherapist here and Aqilah will be provided with heal support so that her leg would be straight and would not get knocked as Adnin's. She would require a stapling and the doctor at Queen's will see her in the next dysplasia clinic.

On another note, we also participated in the MPS study on dental and the kids' teeth have been checked, including Adli's, the unaffected sibling. The kids' will be scheduled for dental treatment in the next visit.

We also had the chance to see the MPS Society's representative regarding the kids' disability allowances that have been turned down. She will try to appeal for it but can't promise anything as this is the first case that she encountered. I hope the kids would get the benefits as it could at least relief my burden here. My employer has not been supportive in this; the letter that I forward thru' them to KPT is still in a ding dong position. The reason being, there is no more budget for UK. They really get me wrong here as I'm not applying for a new scholarship; just applying to convert my scholarship from Split program to fulltime. I am half way done and only one and a half year to go. And with the recession in the UK now, the money that they paid for my fee (87% from fulltime), is more that enough to cover for the fulltime fee as the conversion rate now is only 5.37 compare to around 7 last time. On this basis, I'm sure whoever in my position will take the opportunity; the people who are against this won't because it did not happen to them of which if it happens to them, they would have taken the same step as I am. Whatever happens, I'm not going to miss this opportunity to treat my kids. As long as there are still appointments for the kids, I'd stay till the end of my study...

Looking at the increasing number of visitors, I'm glad that somebody is reading what I'm writing. I'm sure Aina is campaigning about this and if it happens that the readers are smart kids who are pursuing their studies, maybe this is something that they can look into. Or better still, look into gene correction so that in the future, this thing can be avoided. For Aina, nurture your interest in Biology and hit it girl!

Adnin & Aqilah's special chairs in school

Today is an open evening day at the kids' school. The open evening is for parents to see teachers on the kids' progress so far. They are all doing alright in school. What captured my attention was the special chairs that the school provide for Adnin and Aqilah. This is how Adnin's chair looks like.

Aqilah's one is the same as this one. I'm not able to upload it as it is still in my handphone.