The kids had appointments with the genetics doctor and the orthopedics yesterday. Sad to say, the clinical trial will not be conducted at the hospital. Don't know whether the hospital is not qualified as a center or probably the proposal has not been approved somewhere up there. Oh well...
In the meantime, we have to concentrate on the corrective measures to ensure that the kids have quality lives. We had the opportunity to see the specialist in child orthopedics at the hospital and have planned some corrective surgeries for the kids. From the recent x-ray, Adnin's 8 plate screws need to be adjusted because it has reached the maximum dilation. She may have to undergo surgery to have them fixed at proper position. As for Aqilah, her knocked knees have gone worse and she also have quite tight hemstrings that need to be loosen. We have planned for the surgeries to be held during a long school holidays which will be in November.
The kids also need corrective surgeries at their hips because their bones are a bit out of the sockets so as to prevent dislocation.
As for the spine, the MRI results showed the cervical compression which is normal in Morquio kids. They are referred to the spine specialist for further investigation. So far, the kids have not shown any abnormalities or feel any pain with regard to their spine. As long as they are okay, I’d prefer for them not to have any surgery at the spine coz’ the area is very delicate. I’m happy with their condition now, and can’t bear the thought of them being bedridden whatsoever…
