[tri-med] Re: Faith

Hi Anna
>We never thought we would bring her home let alone have her this long. Since 
>most of the >physicians gave us a poor prognosis, we were on pins and needles 
>the first month.

Welcome, and I'm so thrilled that you are enjoying spending time with your 
daughter.  We were exactly in your shoes 14 1/2 years ago.  Pamela was sent 
home to die, after a month she came home and was improving not dying.  So we 
switched are way of thinking and that of our doctor too in order to be 
pro-active like you are now attempting to do.  Pamela was born with a large VSD 
and a small one. We went to the specialist expecting them to fix it, that was 
our mind set. He detected a PDA which would need fixing and the VSD's he said 
were not a concern at this time. Long and short of it they fixed the PDA, the 
VSD's closed.  Pamela is still tube fed and she had the NG and had her gtube 
put in at 7 months.  Today Pamela can walk assisted, toilets first thing in the 
morning and a BM at night(thanks to the help of suppositories),using many 
switches for communicating such as greetings, and choice making. Eats through a 
mesh bag, horseback rides, can do a star float in the water and can kick off 
from the wall, and uses her arms to propel herself when on her back and is 
starting to use her legs more.  She bowls with Special O, loves music and loves 
to dance. She works on a computer and is doing some wonderful scanning and 
choice making.

So that's a condensed version just to let you know that there is hope and lots 
of reward ofcourse lots of work too and advocacy.

Mom to Pamela Tri 18, 14 yo, tube fed, charismatic, Tina 28 , Allan  23, 
Annette 21,Jennifer 16, grandson Lawsen 3, wife to husband of 35 years.
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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