Sept 2011 - Take This With a Grain of Salt

On Wednesday, September 22nd Madison met with an opthamologist - Dr. Levy.  Dr. Levy was recommended to us by Dr. Modi, during her first appointment with the audiologist at Cornell.  The reason for the meeting, is they want to make sure that her other senses (i.e. vision) are okay.

Madison sat in the patient chair (well, on mommy's lap) and Dr. Levy looked at her eyes with all of his tools.  Then, he performed a vision test.  Obviously, no baby can read a chart and repeat letters back to you.  He used pieces of cardboard-like material that were shaped like a rectangle.  One side of the rectangle would have a bar-code/stripe design on it.  He would track whether Madison correctly tracked which side the design was on after he flipped the sheet over and had her quickly glance at it.  The test started out with thick stripes, and slowly increased in difficulty - with the stripes getting smaller and thinner.  Well - she did great!  She has the same vision (if not better than) all of her hearing peers.

Then, we asked Dr. Levy about Usher Syndrome.  For those of you that don't know - a small percentage of deaf infants have a chromosome mutation passed onto them genetically.  In the case of Usher Syndrome, there are 3 main strands - where strand 1 causes blindness by the age of 5, as well as loss of balance.  The other 2 strands also cause blindness and balance issues, but the onset is not until age 10 or later.  (A prerequisite of Usher is deafness at birth).  Dr. Levy's response, "you can take today's results with a grain of salt."  If she has Usher, there would be no way to tell at this age, and unfortunately, the best thing to do is schedule another appointment in a few years.  Dr. Levy believes that 3-6% of deaf infants have Usher.  Hopefully, we will be able to find out if it's Usher during our genetic testing appointment - though Usher is not impacted solely by one (or a few) chromosomes so it's not easy to detect before it's onset. 

It's great to know that our daughter's vision is okay, but upsetting that we still have more questions.