[tri-med] Re: New folks on the list

Susan,
  Thank you for your words of hope.  Reading about all of the sweet kids that 
have made it has given me hope in this dark time in our family.  I have a 3 
year old happy boy that I do my best to keep a smile on my face since he is too 
young to understand what is going on.  
:):) Pamela 

----- Original Message -----
From: Susan Hatfield <hatfield98us@xxxxxxxxx>
Date: Tuesday, June 16, 2009 23:44
Subject: [tri-med] Re: New folks on the list
To: tri-med@xxxxxxxxxxxxx

> Hi Denise and Pamela,
>  
> It is absolutely true that every child's outcome is different. 
> That being said, I think it is crucial to have hope. We did not 
> have a prenatal diagnosis with our son, Zane. But after he was 
> born, we were told that he would live no longer than two months. 
> He is now 2 1/2 years old with a diagnosis of full Trisomy 18. 
>  
> Never give up hope for your sons. You are their biggest 
> advocates in this world. 
>  
> Susan
> --- On Mon, 6/15/09, Jocelyn <jknowd@xxxxxxxxxx> wrote:
> 
> 
> From: Jocelyn <jknowd@xxxxxxxxxx>
> Subject: [tri-med] New folks on the list
> To: tri-med@xxxxxxxxxxxxx
> Date: Monday, June 15, 2009, 11:49 PM
> 
> 
> Hi Denise and Pamela,
> 
> Dennette Suhadolnik's son Dylan is a surviving male with Trisomy 
> 18. 
> He is about 13 now I think. He was our "flagship" in the early 
> days 
> of Tess's life. Dennette rejoined the list recently. Every child 
> is 
> different and there are no guarantees about what will happen and 
> I 
> would not want to give anyone false hope, but the fact is there 
> are 
> some surviving boys out there.
> 
> At 12:23 AM 16/06/2009, you wrote:
> >Hi Denise,
> >   I am new to the list as well.  My sweet baby boy, Hunter 
> Brice, 
> > was diagnosed with Trisomy 18 on May 14th.  I am 33 weeks and 
> they 
> > will deliver him at 37 weeks.  All the docs here in 
> Louisville, Ky. 
> > have the same opinion that if he makes it to delivery he will 
> not 
> > live very long.  It's been a hell month for us, as  I am sure 
> that 
> > it has been for you.
> >   Seeing the e-mails on this list with everyone's ( t18) 
> kiddos and 
> > how old they are has giving me a glimpse of hope.  Though I am 
> > cherishing every kick and moment that he makes while I have 
> > him.  He is due July 14 and we can not help but feel like it's 
> > Hunter's count down to the end.  Again seeing the ages of 
> these 
> > sweet kids is making it a little easier on me.  Plus he is a 
> very 
> > active little guy, I hope that it may be a sign that he is a 
> > fighter when he comes.
> >You're in my thoughts,
> >Pamela
> >
> >----- Original Message -----
> >From: DENISE DEVLIN <denisedevlin@xxxxxxxxxxxxxx>
> >Date: Monday, June 15, 2009 6:04
> >Subject: [tri-med] Re: (no subject)
> >To: tri-med@xxxxxxxxxxxxx
> >
> > > Hi Susan
> > > Thank you for your reply.  Unfortunately I live in Northern
> > > Ireland so finding a good doctor has proven very difficult.  I
> > > am still trying and staying as hopeful as I can but my son was
> > > also diagnosed with a heart defect 2 weeks ago so every 
> piece of
> > > news we get just makes matters worse and so far the doctors
> > > locally have all refused him any help to survive. They are so
> > > sure he will not be born alive that I am increasingly angry
> > > with them all.  I have to believe they are wrong and they dont
> > > know everything and we will get to spend some time getting to
> > > know him.
> > >
> > > Thanks again
> > >
> > > Denise
> > >
> > >
> > >
> > >
> > > ________________________________
> > > From: G&S <hardyboyz@xxxxxxxxxxxx>
> > > To: tri-med@xxxxxxxxxxxxx
> > > Sent: Sunday, 7 June, 2009 6:37:50 AM
> > > Subject: [tri-med] Re: (no subject)
> > >
> > >
> > >
> > > > My unborn son has been diagnosed with trisomy 18 and a
> > > congenital
> > > > diaphragmatic hernia and I have been told nothing can be done,
> > > he will not
> > >
> > > > be incubated to keep him alive and there is no hope. I can
> > > find no details
> > >
> > > > of similar cases and wondered if anyone could give me any
> > > information.> Many Thanks
> > > > Denise>>>>>>>>>>>>>>>>>.
> > >
> > >
> > >
> > > Welcome Denise and so sorry to hear of you sons diagnosis.
> > > While T18 is not
> > > necessarily fatal when they are looking at that with the 
> diaphragmatic> > hernia they are less likely to be grim. What 
> you need to do is
> > > find a
> > > neonatologist at a level 3 hospital that believes these kids can
> > > live. Sadly
> > > to say if you are in Ontario Canada that is not likely ( I only
> > > say this re
> > > recent discussions with a neonatologist re the care of my
> > > deceased daughter
> > > who had t 18  ) if they can fix the defects these kids can
> > > live!  Rebecca
> > > was 14 1/2 years before she died and we loved her every minute
> > > !  she also
> > > had a profound effect on many and was actually a maid of honor
> > > at a wedding!
> > >
> > >
> > >
> > > Susan Mom to Rebecca T18 M 6/6/91-5/2/06 and Mark ADD/LD age 16
> > >
> > >
> > >
> > >
> > >                   Building ___ooOOoo__ Rainbows
> > >                       www.trisomyonline.org
> > >                   Families Helping Families On-line
> > >                   Building ___ooOOoo__ Rainbows
> > >                        www.trisomyonline.org
> > >                   Families Helping Families On-line
> > >
> > >
> >
> >                   Building ___ooOOoo__ Rainbows
> >                        www.trisomyonline.org
> >                   Families Helping Families On-line
> >
> >
> >
> >No virus found in this incoming message.
> >Checked by AVG - www.avg.com
> >Version: 8.5.364 / Virus Database: 270.12.69/2176 - Release 
> Date: 
> >06/14/09 17:54:00
> 
> 
> 
> Jocelyn, wife to Frank, Mother to Ian, Gillian and Susan, Nanna 
> to 
> Carly 22 Mathew 20, Ashleigh 19, Alex 17, and Tess (Trisomy 18,) 
> age 
> 12 yrs, & Benny the Maltese, plus one amazing DIL and two 
> amusing 
> SIL's of whom I'm very fond, and their extended family who are 
> too 
> many to list here.  
> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 
> 
> 
> 
>       
>                   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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