Emily Elizabeth Herb was born on May 28, 1998.
She was 5
lbs. 8 oz. at
birth. She had no real health problems or any
problems meeting her
developmental goals until she was 9 months old. At
that point they
discovered that she had pulmonary stenosis. The
cardiologist decided
only to follow her every 6 months with an echocardiogram
and see how it
progressed. When she was 15 months old she went for a
well child visit
at the pediatricians. We saw a new pediatrician in
the group at this
visit. When she enter the room she said to me "Did
any of the other
physicians ever talk to you about genetic testing?"
That just blew me
away. I was so shocked that I couldn't even ask any
questions. A day
later I called her back and asked her what she thought she
had. She
said that because of her heart issues, her size and also
her facial
characteristics that it could be some type of syndrome but
she was not
really sure what. She referred us to a geneticist and
we went for our
appointment. As soon as we walked into the room they
handed us
information on Williams Syndrome. They said that they
knew what was
wrong with her because of how the pediatrician described
her. However
the longer we were in the room the less sure they were that
she had
Williams. At 17 months she was walking although still
not too steady on
her feet. They suggested that we do the FISH.
We did and it came back
positive October 1999. We immediately got her into
early intervention.
She presently is doing very well. She eats everything
and always has.
We have had no health issues other than the pulmonary
stenosis and at
her last echo they did find SVAS. She is still very
tiny. She is 23
lbs. and 36 inches tall. We know how lucky we are at
this point not to
have a lot of health problems. She goes to the IU
preschool where she
gets PT, OT and ST as well as a regular preschool. We
only have
occasional problems with pinching and biting. We have
finally completed
potty training. I truely believe that she is doing so
well because of
the stimulation she gets from our other children Tyler and
Natalie.
They love her so much and are so patient with her.
She is the light of
our life. I can come home from a bad day at work and
all she needs to
do is smile at me and I forget everything that happened
that day.
