Lordosis - curvature of the spine and all that

A few weeks ago we took Archie to see my/his consultant, I was concerned that the lower part of his back is already quite curved. After waiting around, seeing the consultant's stand in, getting x-rays, seeing the consultant's stand in again we were told he would call after having spoken to absent consultant.

Weeks passed without a call so I followed it up myself. The feedback was that there is nothing they can do [certainly at this moment in time anyway] as lordosis/curvature of the spine is all part and parcel of bone dysplasia.

The only advice was to try and ensure that Archie’s spine and hips are kept as flexible as possible and keep him as stretched and as strong as possible. Though ideas as to how to do this were not forthcoming.

As a child I too went for these annual checkups with a consultant, both my parents would take the whole day off work because it was almost a whole day of waiting before you were called in. He would, with an entourage of medical students looking on, give me a quick once over and say 'no need to do anything at the moment, maybe next year, see you then.' Within minutes we'd be back out in the waiting room.

I live in the hope that maybe there's more that can be done for Archie to minimise his 'difference', but maybe it really is just pie in the sky wishful thinking on my part and more about me anyway - wishing that my back had never been allowed to have got so curved. Don't get me wrong I'm not all out to make him 'normal' but if there are ways of preventing certain things happening I'd go for that, I certainly won't be pushing for him to go in for leg lengthening that's for sure!

Honest to blog

Someone sent me a link to a blog by a man with leukaemia the other day, it was so honest and open that it was impossible not to be moved by it: http://baldyblog.freshblogs.co.uk/

It made me think that in order for my blog to be more constructive perhaps I should be more honest and open about the issues I face especially the issue of having a child with the same disability as me.

But it's SO hard being honest with myself about the whole thing sometimes.

One of the issues I'm currently thinking about after a recent visit to the consultant is how far would I go to prevent Archie getting the same curved spine [lordosis] I have, a symptom of having Kniest. My problem is that perhaps the one thing I've always hated about having Kniest is the curved spine aspect of it - it made me semi-suicidal when I was a teenager.

But even if intervention is possible [and I currently don't know if it is because the consultant we actually went to see was "on a course", great] it will involve spinal surgery which is obviously not without great risk.

Would I be wrong to persue this option or wrong not to?