How do you explain the R word?

My 10 year old is in this sudden habit of using the R word, I don't know where he heard it, but its caught in his head. Every time I try to explain why you don't say it he doesn't seem to understand. Today when I picked him up from school he asked me, "Mom, is Jaxson mentally retarded?" I guess he had a discusion with a girl at school that knows Jax is DS. He seemed to understand it better from a girl his own age than his mom. Maybe I spend to much time trying to say it in words that he will understand, and the girl already speaks his language, I don't know, but it definitly helped.

Jax saw his hemo doc today. He said that he definitly has SVC syndrome, or swelling in the face and arms from the SVC being narrow. The only way to fix it is either in the cath lab, or open heart surgery. He said he was going to talk to the cardiologist. I don't like that idea. The cardiologists are the ones I hate the most at the hospital, they do nothing for Jax. And his hemo doc today gave me an idea why. He said that he has a quality of life so we need to fix this problem. I don't think his cardiologist thinks he has a quality of life, afterall, when Jax had the brain injury he was the first to say we didn't need to fix his heart because he wouldn't survive.

We are finally getting something out of Jax, a stronger head, a little bit of a smile, we can't give up on him now. He's come so far. I'm glad that my pediatrician and hemo doc are on my side, they are willing to fight with whoever they need to. And I'm going to call the palliative care team that follows Jax because they are patient advocates as well.

They are going to message the cardiologist that does heart caths and see if it can be done there, if not, we are looking at open heart surgery, probably in the next couple of months. I will do it for him, because he did great last time, he just needed longer on the vent, because of his lungs, but did great.

So we are going to go on vacation, and enjoy it a little more, knowing that when we get back there will be surgery, either a heart cath or open heart, we'll see.