We just got back from Ropewalk Hearing Centre near town, guess what, Adnin has chosen red colour for her hearing aid with glitters on it - sound funky isn't it? Well, the audiologist who made the mould for her said, that would be a motivation for her to wear the hearing aid.
She had another hearing test and it's confirmed that she would need hearing aid for both ears. At the moment, she had the mould done on her left ear as the right ear has ear wax that needs to be cleared first before the mould can be done. Few drops of earex or olive oil will get rid of the ear wax...
The next appointment to fix the hearing aid would be on 23rd Oct, 2008. Tomorrow there will be another appointment at Radford Health Center. Oct 6 would be at Queen's Medical Centre for her knocked knees which I'm really looking forward to. Her knocked knees have gotten worse and she feels pain when she walks quite a distance.
Wednesday 24 September 2008
Friday 5 September 2008
Posing before dinner...
Radford Primary is really supportive...
I went to see the Admin teacher at Radford Primary this morning to discuss the precautionary measures and things needed for Adnin and Aqilah to feel comfortable in school. Since I'd be staying here till 2010, it is worth the investment and the teacher said she would request for more funds to accommodate this. Among others, Adnin & Aqilah will have special comfortable chairs, ear plugs for them to be used during swimming, play area that is quite secluded from the rest so that they won't be knocked down, utilising key stage 1's toilet and so on.
I'm really touched of how caring they are...
I'm really touched of how caring they are...
Thursday 4 September 2008
The kids a back in school
What a relief, the kids are back in school :-) This new term they are having a new head of school and the drastic change that the school encountered is the kids have to wear uniforms! This morning, Adnin & Aqilah look really great in their uniforms - polo shirt, grey pants and school sweatshirt. One problem, the sweatshirts are too big for them! This is one of the challenges of morquio kids. The smallest size that the school has, is still too big for Aqilah especially. This morning, one of the parents was commenting on Aqilah, 'ahhh so cute...'
Adnin is in Year 4 while Aqilah is in year 1.5, in that the class will cover some of year 2's curriculum. Since there are many students for year 1, they have two classes; the regular one and the extra-regular one. Aqilah is in the extra-regular one - it's a small group consists of smart kids I guess. If not they would not be able to learn the year 2's curriculum...For record purposes, there are 238 students this year.
I'll be seeing the teacher that is involved in admin tomorrow. I gave her the booklet on Morquio this morning and she wants to discuss it further. Probably as a precautionary measure for the kids. How nice...
Adnin is in Year 4 while Aqilah is in year 1.5, in that the class will cover some of year 2's curriculum. Since there are many students for year 1, they have two classes; the regular one and the extra-regular one. Aqilah is in the extra-regular one - it's a small group consists of smart kids I guess. If not they would not be able to learn the year 2's curriculum...For record purposes, there are 238 students this year.
I'll be seeing the teacher that is involved in admin tomorrow. I gave her the booklet on Morquio this morning and she wants to discuss it further. Probably as a precautionary measure for the kids. How nice...
Wednesday 3 September 2008
About Keratan Sulphate (KS)
During the conference, Dr Tomatsu directed us to the international Morquio web page at http://www.morquio.com/. I had a chance to look through and below is more information on keratan sulphate in a layman term :
KS is sort of sugar chain. Morquio patients can not digest KS since one of the enzymes to digest KS is missing in the body. Therefore, KS is accumulated in the body, especially, in the cartilage (bone) and eye cornea. The stored KS will destroy the cartilage layer (growth plate). Because of that, Morquio patients have a lot of signs and symptoms related to the bone.
When I was in Malaysia, I did try to give the kids growth hormon. It's watery type and I still have it in my cabinet and surely it didn't do any good. One way of wasting my money...
It will be unlikely to have a huge benefit by using the growth hormone since Morquio patients have sufficient growth hormone in the body. The fundamental issue of Morquio disease is caused by destruction of the growth plate with the accumulation of keratan sulfate in the cartilage cells. Therefore, we have to clear such storage material. Some patients have used the growth hormone in the past. However, till now, we have not noticed the huge benefits have occurred.
I have already gotten Dr Tomatsu's email address and will email him in a short while...
Monday 1 September 2008
Expert meeting on Morquio disease - very informative
Jerry and Dotty picked us up at 8.00 am using a 14 seater mini bus. We then headed to Wolverhampton to pick up another Pakistani family; a mother and two boys who are affected - Haide 15, and Ali 10. They are wheelchair bound; Ali can still walk a short distance, but Haide can only crawl at home. Haide has had cervical fusion last December 2007.
We reached Hilton Northampton close to 12N, registered for the conference and had our lunch. The meeting started at 1.30pm. Before that, we dropped Adnin and Aqilah at their volunteer, Emma Martin. The girls had 'Little Miss makeover' session whereby they were pampered with face painting, nail painting, nail stickers, individual make over which include hats, jewellery, hair extensions, crown etc. Adnin chose to be a butterfly and she got her wings too, while Aqilah chose to be a princess with her crown and so on. On Saturday, they went for bowling in the morning, and Mad science session in the afternoon. What a weekend for the kids and they really enjoyed themselves!
For us parents, we have series of talks from doctors, researchers, physiotherapy, surgeons and so on, as well as personal experiences of individuals/families who are affected by Morquio. The most interesting part were talks from researchers of the ERT. Currently there are two companies that are working on the ERT for morquio disease and they are at the stage of doing the clinical test for the drug. The clinical test would mean to test on human and the first phase will start in September, with a small number of children. There will be six international centers that will be involved and I really hope that Birmingham Children's Hospital will be one of them. And prayers for this Ramadhan would be for Adnin and Aqilah to be chosen for the clinical study, which means they get to test the ERT first. The criteria that they are looking for - children age 7 - 15 who are able to walk a short distance and able to understand instructions. Adnin and Aqilah have done the six minute walking test earlier on I certainly would not mind making frequent visits to the hospital to get them measured etc.
There were around 200 delegates for the conference. It really is painful to see the kids affected with morquio. Some of them are badly affected that they are wheelchairbound since the age of 10 or earlier. I met a Pakistani friend whose daughter have to be on wheelchair since the age of 6. Being in the UK, they are equipped with electric wheelchairs and they went on here and there like lightning! So fast and if you are late, they certainly can honk you...
We reached Hilton Northampton close to 12N, registered for the conference and had our lunch. The meeting started at 1.30pm. Before that, we dropped Adnin and Aqilah at their volunteer, Emma Martin. The girls had 'Little Miss makeover' session whereby they were pampered with face painting, nail painting, nail stickers, individual make over which include hats, jewellery, hair extensions, crown etc. Adnin chose to be a butterfly and she got her wings too, while Aqilah chose to be a princess with her crown and so on. On Saturday, they went for bowling in the morning, and Mad science session in the afternoon. What a weekend for the kids and they really enjoyed themselves!
For us parents, we have series of talks from doctors, researchers, physiotherapy, surgeons and so on, as well as personal experiences of individuals/families who are affected by Morquio. The most interesting part were talks from researchers of the ERT. Currently there are two companies that are working on the ERT for morquio disease and they are at the stage of doing the clinical test for the drug. The clinical test would mean to test on human and the first phase will start in September, with a small number of children. There will be six international centers that will be involved and I really hope that Birmingham Children's Hospital will be one of them. And prayers for this Ramadhan would be for Adnin and Aqilah to be chosen for the clinical study, which means they get to test the ERT first. The criteria that they are looking for - children age 7 - 15 who are able to walk a short distance and able to understand instructions. Adnin and Aqilah have done the six minute walking test earlier on I certainly would not mind making frequent visits to the hospital to get them measured etc.
There were around 200 delegates for the conference. It really is painful to see the kids affected with morquio. Some of them are badly affected that they are wheelchairbound since the age of 10 or earlier. I met a Pakistani friend whose daughter have to be on wheelchair since the age of 6. Being in the UK, they are equipped with electric wheelchairs and they went on here and there like lightning! So fast and if you are late, they certainly can honk you...
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