[tri-med] opthamologist

about a week or so ago i took kaiya to see the opthamologist. wait...some 
background might help this post make more sense.
kaiya has ptosis in the right eye, the nerve in the right eye is also small. in 
her left eye the nerve is shaped differently - has a coloboma. even with this, 
the doctors don't feel that her vision is all that bad. she tracks well, she 
looks at things. so we had a visit right before conference this year and the 
doc prescribed patching because he felt she was using one eye more than the 
other. and i would have thought that she would use the left eye more because 
the right eye is kind of closed - but he said the left eye seemed to be the 
weaker one. he also prescribed glasses. he said that the prescription wasn't 
all that high so they weren't mandatory - but it might help with some of her 
issues at school. the one issue that i've always had is kaiya will tilt her 
head back to be able to see out of her right eye. doesn't do much for her 
posture! i brought this up to the doc and he said that as long as she's 
compensating for the ptosis, he wouldn't recommend surgery to fix it. so
  we went on our way...and went to see the opthamologist at conference. this 
doc pretty much disagreed with everything our opthamologist here said....which 
brings us to the visit a week ago (takes a long time to get in b/c they only 
take medicaid patients one day a month...blah blah blah....that's another 
story) so anyway - this doc that we had seen previously, and i really liked him 
the first time we met b/c he sat and talked about trisomy and had questions and 
made recommendations...well, he seemed a little disturbed that i brought in a 
letter from the doc we saw at conference. it's not like i walked in waving it 
around saying "AHA YOU WERE WRONG!" i just said, hey - this guy said one thing 
and you said another - i'm confused - can you take another look and see what 
you think? so yes, kaiya is a tough examination because she would rather smile 
and flirt at the doc than look through his silly lenses - deal with it dude! in 
the end the doc brought in another doc in the practi
 ce and this guy took a quick look at kaiya. he sat down and we had "the 
discussion". (i'm sure you are all familiar with it.) he asked if she was going 
to be getting any other surgeries any time soon and i told him no. then he went 
on to say that a lot of kids have ptosis as severe as hers and don't even 
notice it. they just compensate with the other eye. he said that if he saw a 
"regular" kid with a ptosis this severe he would definitely do the surgery. and 
if she was going under for something else, he would definitely do it b/c he 
could just pop in, fix the eye, and it wouldn't be a big deal. but because of 
her trisomy other issues have to be considered. (this is where the hair on the 
back of my neck began to bristle...) he did not feel that she would have any 
issues with anesthesia, and the surgery wouldn't be a huge issue for her 
because it is a simple repair. he said that all issues had to be looked at to 
see if the surgery would really be beneficial to her. we wouldn't
  ever be able to know if her vision was improved all that much because she 
couldn't tell us. so he told me that while it would be a necessary procedure 
for a "normal" kid - for kaiya it was basically an elective procedure. he said 
that some parents choose to be agressive and some feel that their kids have 
enough going on without having to be put under for this type of surgery as 
well. now, to give him credit - he did put it very well. my interpretation of 
our conversation is obviously not worded as well as he said it. which is why i 
think i'm conflicted. i went in with the mind set that this ptosis should 
definitely be fixed, and her compensations are not working because they are 
negatively impacting her posture which as a whole does not work. when i walked 
out, i almost felt guilty for thinking that way... i don't know if it's just a 
mommy thing and i'm scared to let them do anything to my baby...or what is 
going on. we go back in three months for another check up and to gi
 ve him an answer i guess...

so basically, what do you guys think? 

kelly - mom to akaiya T18 - 5 yrs.

________________________________________________________________________
More new features than ever.  Check out the new AOL Mail ! - 
http://webmail.aol.com


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: