[tri-med] Re: Eye Questions

Katy:

Krissy had no problem with rejection. We were after it was
rejecting a month or so afterward but it turned out that it was
the callus reforming. That's when we turned up the drops and
refresh pm (we call it "eye goo") and moved forward on the gold
weight implants.

Its been a year now and its doing great.

All the best,
Terre
=20
Mom to Kevin - 21, Keith - 18, Kenny - 15, Korey - 13, and
precious
Krissy (better known as Princess Krissy!) (T18) - 7 years - with
a smile that lights up the world!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Terre Krotzer
terre@xxxxxxxxxxxx
=20
" There are two ways of spreading light; to be the candle or the
mirror that reflects it."=20
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Show your family how much you care...
Get your Will and Living Will in place today...=20
www.krotzers.com


-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx
[mailto:tri-med-bounce@xxxxxxxxxxxxx] On Behalf Of Katy Roberts
Sent: Saturday, April 19, 2008 1:56 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Eye Questions


She sounds wonderful. Has she ever had any problems with her
transplants, like a threat of rejection? Katy. son t8 mosaic.


----- Original Message ----
From: Terre Krotzer <terrek@xxxxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Saturday, 19 April, 2008 7:00:35 PM
Subject: [tri-med] Re: Eye Questions

Hi there:

This is a long email because "eyes r us"! Krissy has had a lot of
eye stuff!

Krissy had strabismus in (I think) her left eye (maybe both I
can't remember) and we patched for a while. Her optometrist (who
is much more than an optometrist) also prescribed glasses for her
with the inner edges of the lenses "opaque". What this did was
kept her from being able to see when the eye turned in but when
she looked straight ahead or out it was a regular lense. Don't
know if I'm explaining it well.

I don't know whether the patching helped, the glasses helped or
if her muscles just corrected themselves as she got older but
something worked! These days its very rare for her eye(s) to turn
in. Mostly it happens when she is tired.

Our eye problem was the calluses that formed on her corneas
because she doesn't close her eyes all the way at night and
doesn't blink often when awake. The left eye callous grew so
large it began to cover the pupil and effect her vision. Her
sight is her is how she explores the world since she can't get
around on her own.

Last March or April she had a corneal transplant. We were warned
that she might not be a "very cooperative patient" during
recovery. Mostly due to the fear of her rubbing her eye. Well she
came through it with flying colors. Unfortunately they did not
address the "eye closing" prior to the surgery so the callous
reformed on the new cornea.=3D20

At that point they offered two treatments: (not using medical
terms) Stitch the edges of her eyelids together so that to open
surface was smaller. Or, place small gold weights in her eyelids
so that the weight would close the eyes when the muscles relaxed
a bit!

We always knew she was a treasure and we were not willing to
change her beautiful eyes so she now has gold weights in her
eyelids. In addition, we treat them with refresh PM several times
a day and she gets restasis in both eyes twice a day and Preforte
in the transplant eye probably forever.

The calluses are being kept at bay with our current regimen but
if either one every grows to a point that it effects her vision
we will do another corneal transplant. Her vision is just too
important. She seems to sense when she need to be cooperative and
when she can be her teasing, precocious little self.

We have been blessed with doctors who she the beauty and the
blessing in our sweet little Krissy and do all they can to help
her become all she is meant to be.

All the best,
Terre
=3D20
Mom to Kevin - 21, Keith - 19, Kenny - 15, Korey - 14, and
precious Krissy (better known as Princess Krissy!) (T18) - 8
years - with a smile that lights up the world!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Terre Krotzer
terre@xxxxxxxxxxxx
=3D20
" There are two ways of spreading light; to be the candle or the
mirror that reflects it."=3D20
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Show your family how much you care...
Get your Will and Living Will in place today...=3D20
www.krotzers.com



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx
[mailto:tri-med-bounce@xxxxxxxxxxxxx] On Behalf Of Wendi
Sent: Friday, April 18, 2008 11:56 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Eye Questions


Hi everyone!
  =3D20
  Jackson has strabismus in his left eye.  We've been seeing an
eye dr. at Children's Hospital since he was a baby and every year
he tells us to come back in a year and does nothing.  I think the
wandering is getting worse and I'm also concerned about his depth
perception.  He trips over toys all the time and has trouble
going from tile to carpet or tile to different patterned tile.
The dr. did say that he felt J was "far-sighted", but didn't
recommended glasses or anything but "come back in a year". =3D20
  =3D20
  I've decided to get a second opinion from a non-Children's dr,
scheduled for May 6th.  What questions should I ask?  What can I
do to make sure he gets what he needs?  Do I tell the new dr.
that this is a second opinion appt or see what she says about his
eyes first?
  =3D20
  Any input would be appreciated.  Thanks!
  =3D20
  Wendi, mom to Jackson, trisomy 4p, inverted duplication, 3 1/2
years, and Jameson 3 months.

                  Building ___ooOOoo__ Rainbows
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                  Families Helping Families On-line

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


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                       www.trisomyonline.org
                  Families Helping Families On-line

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