[tri-med] Re: tri-med Heart Surgery

Pam, Jacob has T-19q and  has Tetrology of Fallot, with pulmonary atresia,
he
 has had 2 pallitive surgeries, because his particular Tetrology isn't
correctible. One
at 7 months and only weighed 10 lbs, and another at 5 yrs. and weighed 22
lbs.
Jacob is now 15 yrs old, he can crawl, pull to stand,  is g-tube fed and has
a multitude
of other medical problems, but is such a happy little guy! He has a
wonderful quailty
of life!!
Where shall I send pics??!

Love, Reatha, mom to Jacob, T-19q, and wife to Duane, my soulmate
Hendersonville, NC



> i would really appreciate it if anyone who is willing would send a photo
and
> a description of their child listing what they can do , how they function
and
> do have quality of life.

> PAM:  Emily has T13 Mosaic and she had ASD, VSD and PDA repaired by open
> heart surgery at 3 months old...weighing 4 lbs. and with congestive heart
failure.
>  She is now 8 years old and walking and talking and full of life!!  I
would
> be glad to help.  Just let me know who and where to send a pic and note??
>

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

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