[tri-wings] Re: Karly

Kristy:
 
Thanks for sharing with us Karly story.  We as parents or family of Trisomy 
babies are the best group you could have joined to help you heal and live your 
pain and loss.
 
We understand what you have experience with your daughter.  Most of us have 
lived a lost or have a child with Trisomy.  
My daughter is 7 month old, and she has trisomy 18.  We didn't go for the 
operation because the doctor didn't recomended due to the fact that she has 
balance and is not suffering in any way.  She is able to breath and eat by 
herself withouth no artificial help.  She sleep well and she has gained weight 
since she was born.  She has now 11 pounds and 7 onz. She has a big VSD 
(17mm) and pulmonary hipertension, but as i told, her body has balanced and her 
oxigen level is 96% wihthout no change in the last 3 month.
 
Each one of us has made the best for their child in the moment that has being 
needed, to help them relief the suffering.  None of us have to regreat a 
desission because each case even being similar is unique and our desissions are 
always made in the best interets of our children.  There is a saying that we 
have to keep in our mind :   specials children are born into specials 
families.  We are lucky to have those Angels in our lifes, they teach us so 
much compasion, love an understanding that we could never learn in any other 
situation of our life.
 
Keep living your mourning until you need it and with time you will understand 
why things happens as they did!
 
Take care,












 
 
Esmirna, Mon to Adolfo (17) Drummer, student and part-time at Tim Hortons, 
Eduardo (14) Guitarrist and student, and Amanda (T-18) 7 months, married to 
Eric Cugurs my soulmate and incredible partner!




--- El mié 18-jun-08, ushutch@xxxxxxx <ushutch@xxxxxxx> escribió:

De:: ushutch@xxxxxxx <ushutch@xxxxxxx>
Asunto: [tri-wings] Karly
A: Tri-Wings@xxxxxxxxxxxxx
Fecha: miércoles, 18 junio, 2008, 4:01 pm

Thank you to everyone who has sent kind words of comfort, encouragement,
understanding and advice.? It is helping me a lot right now.? It's
unanimous, I'm keeping the book...for now.? We are getting ready to move
within the next month so I will be boxing up everything.? This is usually my
time to purge what's not being used.? The advice from everyone to keep the
notebook for later has given it a new purpose that I hadn't thought of so
it will join the rest of Karly's stuff in a special box when we move.? I
have put it away in a cabinet for now.? The IV pole that her feeding pump
attached to has become a part of the family...we call him Steve (taken from the
movie "Over the Hedge.")? He's proudly sitting in his usual spot
by the couch.? I'm thinking I'll keep him around even when we move.?
Again, thanks for being here to offer the support no one else can give right
now (knowing where I am and where I've been in this Trisomy
world).??I'll be sticking around for quite awhile, I 
 imagine, to receive and to give support when it's my turn to give back.? I
look forward to it.? I have much to share about Karly and what I have learned
from her.? God bless you all.
Kristy
mom to Kendra, 11; Kayne, 9; Kristian, 3; and Karly (t18)?my angel at 9 mos.
and 10 days (8-21-07 to 5-31-08)
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