[tri-wings] Re: Do tri 13/18 kids experience joy?





Melissa,Wow, little Noah is absolutely amazing!!!!He is listening to you and 
cooing like any baby. I am sorry, but I can't remember the specifics of his 
story. I just hope that it was not a case of denial of medical care. Thank you 
so much for sharing. What a beautiful little boy. Barb (Annie's mom)Annie's 
video; 
http://www.onetruemedia.com/otm_site/view_shared?pAab62c735aa5298b04f5d&skin_id`1&utm_source=otm&utm_medium=emailAnnie's
 Story, as told in an endowed lecture at the University of Toronto's Bioethics 
Centrehttp://epresence.ehealthinnovation.org/archives/2008_jun11_633488010617968750/?hideSocialúlse&archiveID%5>
 Date: Wed, 27 Aug 2008 08:38:19 -0400> From: mjsmurdon@xxxxxxxxx> To: 
tri-wings@xxxxxxxxxxxxx> Subject: [tri-wings] Re: Do tri 13/18 kids experience 
joy?> > Hi Barb -> I was just remembering yesterday when Noah was in the 
hospital and the a> PICU nurse asked my sister whether he cried or did 
anything!  Boy, did we> jump to attention and from that point on showed every 
one of his nurses the> videos of him goo-ing, smiling and 'talking' back to me! 
 I immediately sent> someone home to get printed pictures of him healthy & 
happy that we taped to> his door.  I will always advise people to take a 
picture of their loved one> to the hospital and make sure caregivers know the 
person in the bed (maybe> in pain or sick) is NOT the whole person!  The nurses 
loved seeing who Noah> really was!> The doctors were of course another story.  
We had excellent care but they> seemed disinterested when we tried to talk to 
them about the boy before the> time they were seeing him.  We did have maybe 
two doctors that took some> interest.  It is their work I suppose that forces 
them to be unemotional but> that that is so far out of MY reality, I want to 
shake> them! :)  Seeing western medicine in full swing with Noah in critical> 
condition was part marvelous and part totally discouraging.  The ability to> 
manage problems - marvelous.  The short-sightedness of only managing> symptoms 
and not looking at the whole picture, the whole body as a unit -> truly 
disappointing.> > We just saw our neonatalogist at church Sunday and I wanted 
to go up and ask> him if he knew we had 8, almost 9, wonderful and challenging 
months with> Noah!  He was the one who insisted he would not survive a week.  
He got out> of the sanctuary before I could!  HA!> > In case you want to enjoy 
my sweet boy (and my silliness as Mommy) or share> another miracle, here's one 
of my favorite videos.> http://www.youtube.com/watch?v=oxzxa7eImUE> > Melissa> 
Loving Mom to Noah (9/20/07-6/14/08)> full t18 & spina bifida> > > > > On Tue, 
Aug 26, 2008 at 9:09 PM, Barbara Farlow <b_farlow@xxxxxxxxxxx>wrote:> > > Hello 
friends in trisomy,> > In communication recently with an experienced 
neonatologist, I was quite> > surprised to read that he believed that children 
with tri 13/18 were not> > worth saving because they were "not sentient", which 
means that they are not> > capable of experiencing joy or interacting with 
their surroundings.> >> > Wow. This is certainly not what I saw when I did 
research before my> > daughter was born. Sure, it is a tough road, with a lot 
of sacrifice. But as> > for not experiencing joy....> >> > Barb  (mom to 
Annie)> >> >> >> > >                   Building ___ooOOoo__ Rainbows>           
             www.trisomyonline.org>                   Families Helping Families 
On-line
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If you like crossword puzzles, then you'll love Flexicon, a game which combines 
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                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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