[tri-med] Re: tri-med Digest V2 #116

----- Original Message -----
From: <Kjehjohns@xxxxxxx>
Subject: [tri-med] Re: tri-med Digest V2 #116


>
> Yes, that's the part that Urks me... I have been mentioning a "depth
> perception" problem to the docs and they kept saying it's her cognitive
> impairment.  The vision consultant said she does have a depth perception
> problem because her left eye shuts off periodically.  She has nystagmus

Devon has definite depth perception issues too...only it's his right eye
that doesn't work...there's not a complete retina in that one. His depth
perception issues are where I place alot of blame for Devon's dislike of
"not solid" surfaces to walk on. It's also one reason why he has a harder
time going down stairs than up...it's alot scarier going down when you can
tell how far you're stepping!

as
> well as 20/80 vision.  Plus torticollis and she favors her right eye.

I'm unfamiliar with torticollis ??...And I don't remember at the moment what
Devon's vision is...except to say he has only light perception/only
periferally on the right (otherwise blind on the right) and no lower field
of vision on either side (because of the coloboma and cataract placement).
He, too, has nystagnus...along with micro cornea and micro opthalmia.
BUT...all that said...he can find a cheerio on a beige tabletop or on beige
carpeting at 10 paces...or a fruit loop or m&m at 20 paces!!!! And...he very
much enjoys climbing up on the couch and hauling his books with him and
turning pages and looking at pictures for 30 minutes at a time :o) He can
look at the top row of video tapes which is HIS row of tapes (right at his
eye level at the moment...approx 46" or 47") ...probably about 30
titles....and he can pick out EXACTLY which video he wants to watch by
studying the spines on the video covers :o) He's a very opinionated little
stinker :o) Since meeting Emily, I've thought that our 2 kids have alot in
common :o)
Love,
Penny...devoted wife to Joe and "Mom" to Nick (12 yrs...lover of fudge,
rollercoasters, Harry Potter, Yu-Gi-Oh, Fishing, Legos, Popcorn Chicken,
Pizza, cheese sticks, chocolate icecream w/ovaltine sprinkles) and "Mommy"
to Devon (AKA-Stinky Boy, The Chief or Devonrude...Lover of Bear, Elmo and
the Muppets, Barney, Blue, M&M's and food in general, 7 1/2 years old
(6-15-95) !!! Full Trisomy 13 w/balanced translocation 5 and
13)...Trooper...our newly adopted child (our infinitely patient and loving 3
year old male yellow lab...adopted into our family 12/13/02 :o)...KC (the
feline child...Brat gained her kitty wings 7-09-02 she was 16 years old +),
Snitch and Lil' Dude (Nick's turtles :o)
:o) DeLand, Florida
Meet our family at http://www.trisomyonline.org/victor.htm  (Compliments of
my dear friend Karen!
And last but not least, check out the homepage I made!
http://www.geocities.com/penvic4/Penny_sPage.html
The stone that was rejected by the builders, has become the cornerstone
(Psalm 118)

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

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