[tri-med] Re: heart surgery

Logan is T-13 mosaic.  Logan had the PDA but it closed with medication.
Logan was born at 28 weeks gestation.  Logan has severe chronic lung, an
imperforated anus (a colostomy surgically done at 1 day old, weighing =
1lb 11
ounces) he became critically ill - more so then he was already at 6 =
weeks
they surgically placed a mucus stoma for help with acids.  At 3 months 3 =
1/2
lbs he had a gtube, and nisson done.  He was sent home from the NICU at =
129
days as a hospice case.  He then went to his new hospital which is a
children's hospital for an aspirated pneumonia.  He then went back to =
that
hospital 1 week after being released for dehydration from a virus.  He =
was
diagnosed with fungal infections in both kidneys.  We were in 3 weeks =
that
time due to the fungal infection in the blood after the kidneys.  The =
rest
of the procedures were to correct his colostomy's being repaired, =
revised
and finally this past May they reversed the colostomy so that he poops =
in
his diaper.  Logan is rolling over (I call him speed roller).  He is =
very
intelligent but his body is not as functional as he would like Logan =
gets
frustrated.  Logan smiles so cute you just want to pinch his cheeks, =
claps
his hands, shakes his head yes and no appropriately.  Logan is able to =
kick
my coffee table and my computer chair over.  Logan has a vest that has =
sand
weights in it and is able to stand against a wall by himself.  Logan is =
able
to sit up almost unassisted.  Logan is very opinionated and will get =
pissed
if he is not getting his own way.  Logan is playing in a functional and
productive way.  Logan is able to pick toys out of a container and put =
them
back in - he doesn't always want to put them back in but rather throw =
them.
Logan is doing really well with his sit to stand motion with a little
assistance.  Logan will be 3 in December.  If you need more information =
let
me know. I would be more then happy to send a picture.  Tina

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] =
On
Behalf Of Kjehjohns@xxxxxxx
Sent: Monday, September 27, 2004 6:30 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: heart surgery

In a message dated 9/27/2004 3:02:15 AM Eastern Daylight Time,=20
ecartis@xxxxxxxxxxxxx writes:
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=20
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.=20
 She is now 8 years old and walking and talking and full of life!!  I =
would=20
be glad to help.  Just let me know who and where to send a pic and =
note??

Jennifer - Mom to Emily (8) T13 Mosiac & Hannah (5) Michigan, USA


                  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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