Monday, April 21, 2008

Urinary Nerve Rewiring

Another exciting new development in urology: urinary nerve rewiring.

So far they are trying this for people with spina bifida and spinal cord injury. Of course it is also exciting for people with CRS/SA.

"The children previously required the insertion of a catheter to empty their bladder or endured significant incontinence. But as a result of the surgery, they are beginning to void on their own and are also seeing improvement in bowel function. Initially they signaled the bladder to urinate by scratching or pinching their leg or buttocks. But, remarkably, in most patients the brain was able to take over and control urination normally.

Another story on this can be found at Gaining Control.

Friday, April 18, 2008


I saw another news story today about a man with CRS. He is a computer teacher named Adam Holmes. He says, ""Admit your limitations so you can get around them." I think that's a good attitude for us parents to think about. We tell Jordan that he just has to try stuff and find a different way to do things sometimes. We don't want to admit that he has limitations. But maybe this is a good way to look at it--admit the limitations and then find ways to get around them.

Thursday, April 10, 2008

Kid with CRS on Dr. Phil Show

A woman I know through online message boards was on the Dr. Phil Show this week with her son and family. Her son, Jaya, is 1 month older than my son, Jordan, and like Jordan, he has CRS. He doesn't have feeling or movement in his legs, so they have been debating getting his legs disarticulated at the knee.

Click here and page down to A Heartwrenching Decision.

This is a very difficult decision that she has struggled with. I can see both sides of the argument. It is hard because it would be terrible if Jaya had this done and then blames his mother when he gets older and questions why she had it done. It's his body and maybe it should be his decision to make later in life. He won't be a child forever. And maybe there will be medical advances that could help Jaya someday, things that are unimaginable now. How many years ago could we not even imagine pacemakers, MRI, corneal implants, heart transplants? They can GROW BLADDERS now. It seems like nothing is impossible.

However, it's not that I think he should be "fixed." Walking is a big deal to most people. Seeing someone using a wheelchair conjures up a lot of feelings of pity--that poor person can't walk! When someone like Christopher Reeve says, "I will walk again someday," it inspires us. It is understandable that that person would want to walk again! Who wouldn't?

But that isn't how every wheelchair user actually feels. As Bad Cripple” writes: "I wish my teeth were straighter; I wish my son got better grades in school; I wish I could afford to do many things that are beyond my economic reach. What is not on this wish list is the desire to walk. What I wish for is something I have been working toward my entire life: to be treated equally and not be defined by my wheelchair."

Wheelchairs should be viewed as devices that create independence and mobility. The orthopedic surgeon we see has been trying to get us used to the idea of a wheelchair since Jordan was a baby. He stresses that we use cars every day as a way to get around--just another kind of wheelchair, he says. Really, there is no shame in using a wheelchair. Our son is about to undergo serial casting and might need to use a wheelchair. When I tell people about it, I can see them visibly flinch. It is going to take some getting used to, and it will probably be hard seeing him using it. But we just have to realize that it's a good thing to have one to get around in.

But back to Jaya: we don't need to wait to "fix" him with these great medical advances that might come along someday, with the ultimate goal of having him walk. The important thing is giving him a better quality of life. I know Kristi wants to do what's best for Jaya, and that is what is getting lost in the debate on the message board on the Dr. Phil site. She has researched it and is doing what she thinks is best for her child. She doesn't wish him any harm, only to improve his life. None of us should judge her for that.