[tri-med] Re: my grandson Van

Shea
Those first couple months (heck 1st year) is a whirl wind. We too were
shocked at Mitchell's dx. (t13 mosaic) -he is our first child and his
diagnosis was comfirmed a couple days after he was born. We were very
fortunate that the doctors were optimistic. Mitchell will be 2 in December.
As far as vaccinations-we keep up to date with his. He didn't get the RSV
one though because he didn't qualify. I will be thinking of your family.
Hang in there....winning the lottery...I know what you mean, we said the
same thing. And honestly, everytime I look at Mitchell I feel it-we are ver=
y
lucky parents.=20
Take care
Katie Mom to Mitchell t13 mosaic
Www.caringbridge.org/mn/mitchelljohncragg


On 10/23/06 4:35 PM, "shea barja" <bsbarja@xxxxxxxxx> wrote:

> I appreciate everyone's help.  I haven't even told you all about our
> situation, it's been such a whirlwind around here.  Van's condition came =
as a
> complete surprise (born vaginally October 4th), my son and daughter-in-la=
w's
> first child.  His major issue is his heart.  He is having a stint put in =
in
> about a week and a half.  He is home and on a feeding tube, but not a
> respirator, although he destats (?) a lot, having to do with not getting
> enough oxygen in his system.
>   =20
>   Right now I'm majorly stressed because a visiting nurse told my son and=
 his
> wife that she had taken care of three Trisomy 13 babies and that the long=
est
> one ever lived was four weeks.  My son and his wife know the severity of =
Van's
> condition, they are not in denial, but have chosen to joyfully embrace Va=
n as
> Gods' gift and focus on the positive, knowing that his days are in God's
> hands.  So why would a nurse say such a thing?  They were both in tears b=
y the
> time the nurse left.  I would have hurt her if I'd been there.  I'm not a=
s
> reasonable as my kids are.  My daughter talked to my son, and they are ma=
king
> sure that person never comes back.
>   =20
>   On a positive note, after considering how rare Trisomy 13 is, one in fi=
ve,
> ten thousand births? we figured we had won the lottery when we got Van!  =
I
> have to say, out of my five grandchildren, he is the cutest and the sweet=
est,
> and most lovable of all!  Just don't tell the others!
>   =20
>   luv~shea
>   grandma to Van
>   =20
>   =20
>=20
> ---------------------------------
> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls.  Great rat=
es
> starting at 1=A2/min.
>=20
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>=20


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

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