[tri-med] Re: heart surgery

We also did a lot of weight bearing with Soleah.  It was one of the best things 
someone told us at the first SOFT conference we attended in Toronto (1994?) . . 
. 
Gerri Alston Meggett <gmeggett07@xxxxxxxxxxxxxxx> wrote:Leilani is four and a 
half years old. We used a stander (religiously) for
about a year just to get her used to weight-bearing. She just saw the MD on
Friday. She weighs 14.5 kg which is about 32 lbs.
Here are the pix again. They won't post to the listserve, but should show
up in your personal email boxes.


Gerri Alston Meggett, DM
Faculty, University of Phoenix

----- Original Message ----- 
From: "Trisha Thompson-Willingham" 
To: 
Sent: Monday, September 27, 2004 11:52 AM
Subject: [tri-med] Re: heart surgery


> Gerri
>
> How old is your daughter now? How much does she weigh? Did she or does
she use a stander? Can you send the pics again...they didn't come through to
me.
>
> Thanks
> Trisha Willingham
> Mom to Esprit - T18 - 17 months old
>
> -----Original Message-----
> From: Gerri Alston Meggett 
> Sent: Sep 27, 2004 10:22 AM
> To: tri-med@xxxxxxxxxxxxx
> Subject: [tri-med] Re: heart surgery
>
> Leilani had 3 heart defects repaired (a large VSD, PDA, and double outlet
> right ventricle). She was one month old, 2 lbs, and 13 oz when the
surgery
> was done. She sits unassisted, crawls, and is on the cusp of walking.
She
> loves to watch cartoons and torment her little brother. She is full T18
with
> a host of other medical problems, but none bigger than her desire to
> survive.
> See pix attached.
> Gerri Alston Meggett, DM
> Faculty, University of Phoenix
>
> ----- Original Message ----- 
> From: "pam&darrell" 
> To: 
> Sent: Sunday, September 26, 2004 4:51 AM
> Subject: [tri-med] heart surgery
>
>
> > hi everyone.
> > we are about to meet with cardiologists this week to discuss heart
surgery
> for tyler's vsd. he is 2 months old now. his heart is getting worse. in
> our area, heart surgery is done at toronto sick kids hospital. it is
their
> policy not to perform heart surgery on children with trisomy. as this is
> tyler's most serious medical problem, we tend to believe the doctors are
> mistaken. the word policy has begun to sound like a word that includes
> statistics, not human beings. we want to show them why they are wrong.
> > 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. i have already "met"a few of the
kids
> through their parents so i know they live worthwhile lives-doctors don't
> seem to get that. i want them to see it. since tyler has t13 i would
really
> like to know if any t13 kids have had heart surgery and what the outcome
is.
> i would also like to know about the t 18 kids, too. darrell and i are
very
> angry that living, breathing human beings are being lumped into a
catergory
> that seems to be labelled "discard". any help anyone can give would be
> awesome.
> >
> > another thing i would like is to find the canadians on the list if they
> would not mind. i want to find out how they have navigated through our
> health care system. quite frankly, we are baffled.
> >
> > i know i am asking a lot from one email, but everyone on this list seems
> willing to step up and help change things for special kids.
> >
> > much appreciatiom,
> > pam, hubby darrell, tyler t13 mosiac, kira 2
> > elora ontario
> > Building ___ooOOoo__ Rainbows
> > www.trisomyonline.org
> > Families Helping Families On-line
> >
>
>
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>
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>
> Building ___ooOOoo__ Rainbows
> www.trisomyonline.org
> Families Helping Families On-line
>
>
> Building ___ooOOoo__ Rainbows
> www.trisomyonline.org
> Families Helping Families On-line
>


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




Nanci - Wife to Mike, the ever patient one . . . Alicia, 20, nursing student . 
. . Shani, 14, homeschooler, biggest helper . . . Soleah, 10, Trisomy 
18M--always teaching me . . . Corey, 2, my boy-wonder!


Romans 5:3  . . . but we also glory in tribulations, knowing that tribulation 
produces perserverance; and perserverance, character; and character, hope.

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

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