How you know there is nothing they can do for your child..

...when they start to focus on you.

Yesterday we took Jocelyn for her appointment with a specialist who focuses on the problems with her spine and hip. We got pretty much what we expected, but some, sort of good news. Although her spine is curving and will likely eventually bend her so it starts to compress her organs on that side, there is a small chance it may not progress any further. Also, it will take many years, (probably 4) before it gets that bad, so we have time. The same thing for her hip. Although it appears to be starting to dislocate, there is a chance it will progress no further. We have about 2 years before that becomes critical. We can pretend to be a normal family for a bit longer.

The real interesting part comes after talking about her. This is when he talks about us, the parents, and alternative therapies. Alternate therapies are those with no studies showing they work or do not work. Alternative therapies range from stretching (no studies prove that this will help with her hip) to all sorts of weird, witch doctor type stuff.

effect, something like 40% of people will report improvement from anything as long as they He did not propose or endorse any of these things. He made it clear it is up to us and that we must look at it. (The wife has been doing a lot of research on this stuff and seemed to know more about some of them than he did. Also, due to the placebobelieve it may help.) The only caution he gave us is the effect that alternative therapies can have on a marriage and families. There are people who have mortgaged their house to pay for this stuff. As well, usually one spouse wants to try anything while the other thinks there is no point, and this leads to serious problems when the family is poor and living on the street and one spouse thought it was a waste of money.

So, it seems that since there is very little we can do for our daughter, the biggest problem we face is dealing with the effects of that and the possible break up of our marriage/family.

For me, I want to do what is best for our daughter. To me, that seems to be making her as comfortable as possible. At this point, there is nothing we can do to treat her problem, only the symptoms. I am not willing to mortgage the farm when it won't address the problem.

If there was even a slim chance we could treat the situation with her brain, I might feel differently.