Saturday, 22 November 2008

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!

Wednesday, 12 November 2008

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.