I Knew it Was Worse

"Christian's" ankle has not been right. As he has been playing tee ball, it has been extremely obvious that he can't run like the other kids. It has just broken my heart. He doesn't seem bothered by it, but the truth is that he can't keep up.

I insisted on a new MRI and I am so glad I did.

He has joint damage from repeated bleeds into his right ankle, but the MRI showed significant change from his last MRI a year ago to the "talus" bone in his foot. Now we know why he has changed his gait and protects his foot.

The good news is that it can heal, the bad news is that tee ball and soccer are out of the question, at least for now. We have signed him up for swim lessons and hope that he loves it.

I almost ignored the problem and hoped it would just go away on its own. But deep down I knew it was something more. The doctor even admitted that he wasn't expecting anything to show up except a possible bleed, and was very surprised.

You have to go with your instinct. Sometimes it makes absolutely no sense, especially if a doctor is telling you otherwise. The "professionals" do not always have it right. When you are the parent of a child with a chronic condition, you are the ultimate expert! Don't forget that. Speak up! Be heard! Make a little noise if you have to!

The bottom line is that you are advocating for your child.

That is reason enough to be the squeaky wheel.