[tri-med] Re: [tri-family] Anthony is here

Hi Georgie :o)
I'm a little late here...but welcome to the family :o) AND welcome to
Anthony and the rest of your family :o) My name is Penny and I'm Joe's
wife...and Nicholas (almost 12 yrs) and Devon's mom :o) Devon has Full T 13
w/balanced translocation 5 and 13 (I'm a carrier too), I've been trying to
follow Anthony's progress...I read in your first post asking about kidney
problems and now later I'm seeing something about dialysis or transplant
too?? Did they determine that he positively has a kidney problem? I saw
where they had a catheter in him and that he is jaundiced. But
again...Devon, too was jaundiced (bilirubin level was still 16 when we
brought him home...had to go for foot sticks for over a week). Sorry if
you've already answered this but I have a reason for asking. When Devon was
born the original reason they airlifted him to another hospital was because
they thought he had poly cystic kidney disease and enlarged kidneys which
would have meant he either needed dialysis or a transplant. When the
radiologist read his renal ultrasound at our hospital...he thought Devon's
kidneys looked as though they were covered with cysts (I was never sure if
the cysts were covering the kidneys surface or inside the kidneys???). To
me...his kidneys looked like a moonscape on the ultrasound. When he got to
the other hospital where a specialist viewed the US and also did another
one...it turned out there wasn't anything wrong with his kidneys at all. He
said that when a baby is born there are often pockets of oxygen covering the
kidneys...and it was normal...his kidneys were also not enlarged. I never
understood why they freaked in the first place because Devon's output was
normal....but they had me convinced that something was terribly wrong. If
they have positively diagnosed a definite problem I apologise for writing
all this...it just always strikes a cord with me when someone mentions
kidney problems. I truly hope that Anthony will have a similar story where
his kidneys are concerned ;o)
Please know that you and your family are in my prayers for strength and
peace and healing warm fuzzies are heading your way :o) Take care :o)
Love,
Penny...devoted wife to Joe and "Mom" to Nick (11 1/2 yrs...lover of Harry
Potter, Pokemon, Fishing, Legos, Zelda, Popcorn Chicken, Pizza, cheese
sticks and chocolate icecream w/ovaltine sprinkles) and "Mommy" to Devon
(AKA-Stinky Boy, The Chief or Devonrude...Lover of Bear, Elmo and the
Muppets, Stuart Little, Barney, Blue, Pooh and Co. and food in general, 7
years old (6-15-95) !!! Full Trisomy 13 w/balanced translocation 5 and
13)... 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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