The pain of not moving

From the start, Brayden has had difficulty being in his own skin.  As a baby, he would thrust his head back and forth, he would arch his back, never finding a comfortable place.

Through physical therapies, supportive seating (like his wheelchair), and just him growing into a little boy, he has been getting better.

He cannot move much on his own.  He can bring his hands to his face and kick his legs, all a huge accomplishment, but that is about it.  Whatever position we place his body, is where he remains until we change him.

Can you imagine not being able to move your own body?  Just in the time I am sitting here to type I have shifted in my chair several times.  Even in our sleep we change positions.  We are constantly changing positions, most of the time without much thought or effort.  Brayden's little body is dependant upon us to help him.  Does Brayden feel trapped?  Does he feel discomfort?  Does he feel frustrated?  There are certainly times when he seems stuck and crying out for help.  He no longer wants to lay on his back or if he is sitting in one of his chairs, his head falls to one side and him cannot get it back up.  It makes me sad for him.

He tries to find a place of comfort.  Lately, it has been bringing his legs up, almost to a fetal-like position.  That even if he wanted to straighten his legs, he could not.  It has been causing his legs to be tight.  Stretching and straightening his legs has become part of the daily routine.  We have ordered some leg braces.  The braces are to be used for short periods of time to help him keep his legs straight.

The braces have been ordered but in the meantime, his nurse was making do with household items (she is so crafty).  Brayden is braced with magazines wrapped around his legs.

The position Brayden prefers is to have his legs pulled up tight, however once we get his legs straight it seems to be a nice relief for him and he can stay like this for longs periods of time.

His sweet little skinny legs need our assistance.