[blindkid] conformer question

[EMMOL at aol.com]

Hello, 
We too are a family on a first name basis with the ocularist! My son just  
turned 16 and first visited the ocualrist before he was a month old.This was 
one  of the recommendations made by his ophthalmologist when diagnosed 
shortly after  birth. Those early years were quite intense, for many reasons, 
but ocular  prosthetics was one of them. It was one of the best decisions we  
ever made, though! The clear conformers were a challenge. They had tiny 
stems on  them to put them in and take them out, but they were very interesting 
to a  curious baby. He often tried to play with them. We made great efforts 
to make  sure that he had a toy in his hand to explore, rather than his 
eyes. This also  cut down on any eye poking. But there were those times when he 
would get them  spun around and none of us were happy when that happened. We 
became experts  at dealing with these small challenges in the middle of 
less than convenient  times.(I always have a little container with a suction 
cup in my purse.)  And yes, due to the rapid growth of babies we were often 
making trips to the  office for the next size. This happened with the 
prosthetic eyes as well.  We needed to go back for build ups as he was growing. But 
that is what we all  wanted. A good thing, but certainly not something we 
could check in with  friends or neighbors about. Few people had a clue what we 
were dealing  with. The clear conformers do allow for proper growth of the 
face and help  to form the needed space for the eyes. All necessary steps in 
growth and  development, for children with this eye condition. Yes, in the 
early years the  insurance company questioned us, as "it was all new to 
them." I assured  them it was all new to me, too, and was emphatic that it was 
not cosmetic! We  haven't had difficulty with Blue Cross since those early 
years. We shall see  what comes now. During those early rapid growth periods 
we were frequent  visitors to the ocularist, but now we generally go once a 
year. We  fortunately never had to have eye surgery nor have we had to use 
anesthesia. All  procedures were in the office. As a tiny baby he was in his 
car seat. Next we  sat in the chair & we held him, which was a bit of a 
challenge with a  squirmy little one, but eventually he "got it" and would just 
be still while we  held him and later just sit in the chair with us next to 
him. All these years  later we are still visiting the same office and he is 
quite independent, but  still discussing sports and current events with these 
caring  professionals. A trusted ocularist is most valuable! We fortunately 
had a  great recommendation and have dealt with the same family of 
ocularists in the  Philadelphia area over the years. It has been well worth all of 
our  efforts!
Eileen

To: blindkid at nfbnet.org
Sent: Wednesday, May 13, 2009 9:30:30  PM
Subject: [blindkid] Conformer question?

Hi there,
Is anyone  familiar with conformers?  Our eye doctor suggested it for our
daughter  to help keep the eyes healthy.  Hannah is completely blind.   She
explained that these conformers will help to keep the eye healthy  and
growing.  If we do nothing, then eventually her eyes may start to  set back
in her head further and further.  SHe also said that the  eyelids/eyes don't
grow and this helps to stretch out the eye area/lids to  make her look more
"normal".  They are a hard, clear, plastic shell that  you insert over the
eye.  Eventually you can have them painted different  colors if you want.  I
hope this makes sense and someone else has gone  through this?  I was just
wondering if this is necessary, cosmetic, a  good idea???  Any thoughts
would be helpful!  Thank you!   Laurie Wages




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