[tri-med] Re: 5 month old Trisomy 13 baby

----- Original Message -----
From: "jonathan dixon" <sgtdixon@xxxxxxxxx>
Subject: [tri-med] Re: 5 month old Trisomy 13 baby


>
> Daylin seems to be growning very well.  He was 5lbs 12oz at birth and is
now 14lbs at 5 months old.  So we have never thought about continuous feeds.
I did think it had something to do with stomach pain for a while.  He is
such a gassy baby!


Hi Nancy :o)
Welcome to the family!!! My name is Penny and I live in Florida with my
husband (Joe) and our 2 boys...Nicholas (12 yrs old Nov 23) and Devon
(rhymes with Kevin...7 yrs old). Devon has Full T13 w/BALANCED translocation
5 and 13. Devon isn't your "typical" T13 either...if there is such a
thing...every child has different health and development issues :o) It
sounds like Daylin is growing VERY well...Devon has feeding issues (because
of his cleft palate) until he was 9 months old and had it repaired. At the
time of his surgery he weighed a little over 12 pounds...3 months later when
he was a year old he was already up to 15 pounds...his feeds got MUCH easier
and less time consuming after the cleft repair :o) At 2 years old he weighed
25 pounds and at 3 years old he weighed 35 pounds....now at 7 years old he
weighs 50 pounds as of June of this year :o) He's my very own MOOSE!!!!

You spoke about Daylin being a gassy baby...Devon was too....AND because of
his low/high mixed muscle tone he had a hard time passing it and moving his
bowels!  That's another department we don't have any troubles with anymore!
The more mobile he got the easier it became to pass gas (HE'S A PRO
NOW!!!!!) and move his bowels!! He's been walking totally independantly
since he was 3 1/2 yrs old :o) He's even potty training....it's a work in
progress now for about 2 years. What that means is that he asks to use the
potty about 80% of the time (only during the day - and we have to pull his
pants down and he sits down on the potty ) by using a voice switch/PEC
combination...when he uses the potty he gets an m & m for a reward...and
rest assured if we forget to give him one he goes and reaches them off the
microwave (he has to reach over a gate to do this) and brings them to us
very impatiently demanding his reward ;o) It's widely known by all who know
him that there's not a whole lot he wouldn't do for food!!!!!

I wish I had some helpful advice with seizures/apneas...but I don't have any
experience with them thank heavens. Well...I DO have experience with grand
mal seizures in an adult that resulted from severe brain injury (my
ex-husband)...but not with children.

Where do you live??? If you already told us...I apologise I missed it :o)
I'd love to hear more about you and yours :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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