Sunday, June 19, 2011

All about L

I've said before I would tell his story.

My boy has something wrong with him. You can see it when he walks, when he runs, when he sits. He often tires easily and I watch over him more than I should at this age.

He is patient of Shriners for curvature of his legs and potential scoliosis.

He's a patient of the local pediatric neurologist because unexplainable complete left sided weakness.

I saw the problem early on, he sat up on schedule but not "right". Something was off. My great and wonderful pediatrician, Dr. Beth, noticed it too. So she sent us a referral to First Steps, the state's early intervention program. He qualified for occupational therapy but not physical therapy, but we were told the OT would recommend PT and sure enough within 3 visits we were getting an PT consult. Through therapy he started self feeding and walking and gaining strength.

Then he turned 3 and aged out of the program.

We've been fighting for something for him ever since. See we have no official diagnosis. No one can explain why he has this weakness. No diagnosis = no treatment according to all that control those things.

So we've sought things out on our own. Some things work, some don't. Current things to help him with balance include karate and swimming. The karate master has been great at building his confidence and working with him.

We may never ever receive an official diagnosis and he may eventually get to the point where you can't tell, you can't see that foot turn in.

But until then, we will continue to look for ways to help him, even when the healthcare system doesn't seem to know how.

- The Big Blue Momma