Well, we've finally decided to give valium a try. I joined a few cerebral palsy related groups on facebook and asked for everyone to give me their opinions from experience, and a couple of people got back to me, and so that helped a lot. I find that it's so difficult to find the support and guidance we need, but things like Gabriel's Life and these groups on facebook really help. It's one thing having good doctors and professionals to guide you and give you advice, but I also really think that we, as parents of a child with serious medical conditions, need each other just as much. Doctor's know textbooks and have in-clinic experience with other patients, which is of course important, but other parents have the hands-on experience of living with and caring for their children in a way that only parents can, so we are able to support and advise each other in ways a doctor never could.
Anyway, the purpose of this post was jsut to say that we're going to be trying the valium. We've heard some good things and some bad things, but more parents who got back to me say that it's been a huge help in their child's life than not, so we're going to give it a shot. We can always stop if it starts affecting her in negative ways, but at this point we both agree that it's really important to do whatever we can before her bones and joints set too much - the sooner she walks independantly the better. Lisa, her physical therapist (the one we love and has been working with her since she was 4 months old) told us something the other day that made me take a step back and realise that we really need to be doing even more than we already are. Gabe asked her whether she thought Avery would ever walk completely normally, or whether you would always be able to tell that there was something wrong with her, and Lisa said that she would probably always have a little bit of a noticably crouched posture when she walked. I think I always assumed (at least since we were told that she would eventually be able to walk independently) that once she learned to walk you would never be able to tell that she had cerebral palsy because she would be walking normally, but apparently not. Of course, the fact that she will walk is miracle enough, but I don't want for her to have to live with any kind of struggle that she doesn't have to, so if there's anything we can be doing now to help her walk normally, then I want to do it. We're still waiting for the TheraTogs and her new walker, which I'm getting a little impatient for because she's gone backwards a little bit with some of her posture and stuff. Not much, but of course I feel that we can't afford any loss of progress. So, we're having a little trouble getting hold of her valium prescription, but as soon as we get it we'll start her on it and hopefully will be able to see some significant improvement in muscle tone, etc, pretty quickly.
It may be a little while before I post again, because I am still pregnant even though I felt sure this little boy would have arrived by now!! But he's taking his own sweet time and doesn't seem to mind how much agony he's putting me through!! Oh well.... sometime in the next week or so this will all be over and I will have a brand new little baby boy to show for it and the world will once again be a happy and accessible place!