[tri-med] Re: opthamologist

hey Penny, in the Boy in the Moon story in the Globe and Mail the young man
has elbow/arm splints because he continually and forcefully hits his face
and head...one of staff people came up with padded pringles
containers...really padded and covered and then held in place with velcor
straps..these look like they can come off when the young man does crafts or
music and is distracted enough to stop hitting for a short time.

Catherine, mom of Becca (32yrs Trisomy 13Mosaic)


-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]On
Behalf Of Penny Victor
Sent: Wednesday, December 19, 2007 7:50 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: opthamologist


Hi Kelly...
OK...I could get all ugly about this and engage in a rousting round of
doctor bashing but I'm sure you've already thought it and heard it all!!!
Hears what I think...and it's simple really! It seems to me that if the
problem is effecting her posture and therefore her balance and gate...then
it is NOT "elective" or unnecessary. And if he would do the procedure on a
typical kid then there should be no problem doing it for Kaiya...she
deserves the same consideration. Seems to me it could be considered cosmetic
for a typical kid to have it done???

Devon has VERY limited vision and we're dealing with increased problems
because of his cataract. His doctor says he will do surgery...but only when
the drops we're using presently don't help anymore. His reasons are that he
sees how Devon is always messing with his eyes and he's fearful that when
Devon has surgery (and he will have an incision in his eye) that he will
irreparably damage his eye when it's more vulnerable. And when I asked if
there would ever be a point of no return where surgery would no longer help
the cataract (meaning we'd waited too long to remove it)...he said that
no...the cataract only involves the lense and can be removed and replaced no
matter how bad the cataract gets. So for now we're satisfied...mainly since
we've seen a teeny bit of improvement since he's been on the vision
supplement and the Cyclogel drops to dilate his pupil every morning. But the
doctor will be seeing him every 4 months keeping tabs on the cataract and
when we see it's starting to take a nosedive...the surgery will be done and
we'll just have to figure a way to splint his elbows so he can't hurt his
eyes.
 Anyhooooo...that's my opinion...
Love,
Penny...loving & devoted wife to Joe, the best husband in the world...mom to
Nick (17 yrs old...lover of Fishing, Dragons, Turtles, WofWC,
RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (12
yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Elmo, & food in
general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper
the Wonder Dog...our 10? year old yellow lab adopted from FL Lab Rescue
12/13/02 :o) Please visit the webpage my wonderful friend Karen made for me
on our trisomy listserv at:
http://www.trisomyonline.org/victor.html
AND...see our Trooper on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html (Look for the name
Trooper...page 4 or 5 right now) AND :o)
http://livingwithtrisomy13.org/album9.htm
AND http://web.coehs.siu.edu/Grants/TRIS/
AND my new slideshow at:
http://www.onetruemedia.com/shared?p=3e291611cb644c422ff6bb&skin_id=402&utm_
source=otm&utm_medium=text_url
"Faith sees the invisible, believes  the incredible & receives the
impossible"




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

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