[tri-med] Re: Anyone have any insight or advice???

----- Original Message -----
From: Karen Schuler <karens@xxxxxxxxxxxxxxxx>
Subject: [tri-med] Re: Anyone have any insight or advice???


>
> Alex is small in this department and not growing as we would expect but
> technically he is within limits. He does have scrotal hypoplasia, but the
> testes have always been OK. However they have not grown so we are
> watching........... He does however have erections so we are not too
> worried. The scrotal hypoplasia can be corrected later with plastic
surgery
> if need be.

OK...Karen...
call ME Scarlett too!!!!  If the child gets erections regularly does that
indicate that maybe there isn't a problem?? Devon DOES get
erections...that's what I meant when I said something about the length when
I change him when he's sleeping...I was just trying to be delicate instead
of coming right out and saying, "when he gets a woody". :o) That's really
the only time I can see the whole thing...but since "Petey" was freed he has
become a little more visible...well probably alot considering how far
retracted he was. The hygiene issue was one of the main reasons that I
wanted the penoplasty done as you may recall. The ped had tried to
circumcise him at 4 months in an effort to help with the retraction
thing...but again you may remember...the suture slipped on "the bell" the
night after the circumcision and he hemmoraged badly (and because of all the
space down inside there because of the retraction, the ER docs had to
"express" the blood out of the space/cavity...VERY painful for Devon and
probably as painful for me to watch...we were both crying inconsolably)...so
we were told to let the skin (what little foreskin there was left)  heal up
around the opening at the tip....hence the trapped penis :o(
So...is it something I should at least address with his pediatrician?
Love,
Penny...devoted wife to Joe and "Mom" to Nick (10 1/2 yrs...lover of
Pokemon, Legos, Pizza, cheese sticks and chocolate icecream ) and "Mommy" to
Devon (AKA-Stinky Boy..or Devonrude...Lover of Bear, Stuart Little, Barney,
Blue, Rolie Polie Olie, Pooh and Co. and food in general, 6 years old
(6-15-95) !!! Full Trisomy 13 w/balanced translocation 5 and 13)...Brat and
KC (the feline children)
: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/Heartland/Shores/1963/index.html
The stone that was rejected by the builders, has become the cornerstone
(Psalm 118)

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
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