[tri-med] knee caps

well we had our orthopedic referral for kam's dislocating knee caps yesterday.  
we waited 1.5 hours to talk to the resident (who was pretty nice), then 15 more 
minutes to get 3 xrays of each knee and magically after 2 hours the orthopedic 
DOCTOR came in the room.
first thing out of his mouth was "what is her life expectancy?"  i said she has 
already passed her life expectancy.  but we do know a young woman who is 27 
(but i think joanna is now 29?).  discussion on why i wanted her knees to 
function better...do i think she will ever walk independantly?  no but she 
loves to cruise in her pony and has hit new developmental goals now that she 
can go to things she is interested in.  what do i think her cognitive age is??? 
 oh between 9-15 months.

well he wouldnt recommend surgery for someone that wont be doing much (i didnt 
want surgery anyway).  i had been putting braces on her knees and he said in 25 
years of treating kids with crhomosomal abnormalities he had never thot to use 
pattelar (sp?) braces on them.

after 2 hours it was do what you think is best.  her body is not made to walk 
really.  it is not her knee cap that is the main problem it is her knees are 
not formed properly.  i might try those hinged metal braces he said if the knee 
was lined up better the knee cap might stay in more and not get so irratated.

i really think being a mechanical engineer helps me think outside the box for 
solutions for kam.  if i was a therapist or in the medical profession i might 
just go down those channels right away.  it was a super waste of time (and 
mony) but i am reassured my apprached for "kam things"  is good.
jude, mom to derek-17, kelsey-15 
and kameron-6-full t18
golden, colorado usa
http://home.attbi.com/~jfwolpert2
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
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