Yesterday we found out that Namine’s most recent x-ray shows evidence of a congenital defect in her right shoulder. This was discovered by a tech, not a doctor, which surprises me. Of the thousands (yes, I have no doubt the number is in the thousands) of x-rays Namine has had done, this has not once been found until now, more than five years after her birth.
According to Namine’s special needs director,
She has a congenital abnormality of her right acromion process and glenoid.
What does that mean?
So let’s break this down. A process is simply a “projection or growth of tissue from a larger body.” (Yes, bone is, biologically speaking, “tissue.”) The acromion is a piece of bone located on the scapula (shoulder blade). The glenoid cavity connects with the humerous (the arm bone above the elbow), forming the socket joint.
So, to summarize, Namine has a congenital defect that has to do with her right shoulder. (That’s right, she was born with it, and they never knew about it until now.) The special needs director doesn’t know any more than this, right now. In fact, he told us that he’s never even heard of this occurring before, to say nothing of having a name for it.
We have met with the geneticists at the hospital before, and discussed the connections her birth defects might have with each other. Caudal regression syndrome is known to affect other parts of the body; bladder control is a big one, as we well know, but it is also likely responsible for Namine’s scoliosis. But affecting the shoulder? That’s currently blowing everyone’s mind.
When I found out yesterday – Jessica relayed it to me, as I was at work – I was livid. How many [expletive deleted] doctors have examined her? How many [expletive deleted] [expletive deleted] x-rays has she [expletive deleted] had done over the years? And we’re only finding out about this [expletive deleted] NOW?? Jessica told me yesterday that she felt the same way (if not as vulgar), and that she agreed that we have every right to be angry.
But I’ve thought about this long and hard. And I’ve come to the conclusion that anger is dumb.
Let’s consider for a moment. All Namine’s life, we’ve been told that Namine’s right shoulder has poor rotation and greater limitation than her left because of all the PICC and central lines placed over the years. It’s always been her right shoulder, because that’s always been the bad shoulder. But why was it the bad shoulder to begin with? I’ll tell you: because (so we – and doctors all – thought) it was made bad from the initial line placed when she was just a tiny newborn, living in a bubble in the NICU.
So now it comes to light that it was bad before. So what? She’s been living with her shoulder as it has been all her life. None of that changes now. Therapists have tried for years to improve her shoulder, and they’ve not gotten very far. Maybe now we might know why. But again: so what? It doesn’t change the fact that she still uses it. She doesn’t know – nor does she care – why her right arm can’t do as much as her left, or why it gets tired more easily. She accommodates herself, doing what she has to, to be as independent as she can be. None of that changes. None of what matters changes, that she is a strong girl, that she never gives up.