Friday, August 31, 2012


As Bradley's one year appointment was wrapping up last month,
 the Pediatrician mentioned a syndrome that he suddenly thought of.
One that had mottling in the retina and progressive blindness.
He asked if the opthamologist had ever seen mottling.
I didn't recall.
He said, "Get an appointment. Have him check."
So I called and I got in a month later.
And yesterday was that appointment.
I have chased so many syndromes, that have resulted in nothing.
And as I was driving to the appointment, I was thinking the same thing would happen again.
No answers.
And he took us back.
And he saw Bradley's oxygen and tube from his stomach.
And I said I was having a hard time keeping his glasses from fogging up.
And the opthamologist didn't scold me like I thought he would for not keeping on the glasses.
Instead he waved some of his toys in front of Bradley's face and saw what I have been seeing.
And he asked the same questions he always does.
And I told him Bradley doesn't look at much. But that he responds to sounds.
And I told him I was really there to talk about mottling in the retina.
And I told him the name of the syndrome.
And the opthamologist turned away from me and faced his computer to try and look up the syndrome.
The opthamoligist confessed he had read about this syndrome only once.
He said he has never seen a child with it.
He said if Bradley had this,
he would probably be the only patient with this syndrome,
he would ever see in his career.
He could not find the syndrome on the database
he normal refers to and he remarked again on how rare it is.
So he used plain old google and he looked at the pictures of retinas referenced to with this syndrome.
He flipped back in Bradley's chart, to previous visits
and showed me that he had noted mottling before.
But he wanted to look again.
So we dilated Bradley's eyes.
And the exam commenced.
And he saw even more mottling this time.
A lot more.
More pronounced.
And he noted that Bradley didn't mind the exam light shining in his dilated eyes.
And he turned up the light and shone it directly in one of Bradley eyes and Bradley didn't even blink!
And he said that is a sign of VERY poor vision.
And I said, "Like blindness?"
And he said "YES!"
And I said that Bradley's optometrist has diagnosed Bradley with cortical blindness.
And he said he didn't think it was cortical. That it was a structural thing.
Not from damage. But from poor formation.
And he reminded me of Bradley's poor foveal depression
that he had seen in the NICU when Bradley was tiny.
The poor foveal depression, Bradley still has.
And I said "So you do think he's blind?"
And he was quiet.
And I said, "You have got to tell the geneticist this! I need a paper saying that!"
And he said he would send us one.
This news is not surprising to me at ALL!
It actually explains A LOT!
And I am HAPPY about it.
Because all his developmental delay has, up to this point, been blamed on his IQ.
And I've never thought Bradley was unintelligent.
In fact, I've thought the opposite!
AND to blame EVERYTHING on his tiny brain is very hard on me.
Because brains either fix, OR they do not!
It's horrible to have health problems.
But to think your child has a slow brain is hard too.
And maybe he still does, which explains the huge lapse in development now.
I do not worry about the things in this life that Bradley will "miss seeing".
At this point, I'm grateful he is still alive!!!
If you've been following this story at all, I think you'll understand that.