[tri-med] Re: Preparing for our son with Tri9p/Doretta

Your response has given my heart a lift this 
morning, I just love it when "our kids", seem to 
thumb their noses at the doom sayers in the 
medical profession. So happy to hear Bryson is doing so well.

At 09:07 AM 12/06/2009, you wrote:
>Melody,
>
>
>
>I noted that you are in the Seattle/Tacoma 
>area.  My grandson Bryson was born with Full 
>Trisomy 13 and he and his parents live in Tacoma 
>at Fort Lewis.  I'm from South Carolina and am 
>at present in Tacoma visiting my grandbaby for 
>his 3rd birthday which was just Tuesday, the 9th.
>
>
>
>We didn't know he had Trisomy 13 until he was 
>born as the only thing that showed up on 3D 
>ultrasounds was a cleft lip and possibly a cleft 
>palate and possibly hypospadias.  The cleft lip 
>and palate have since been repaired and he did 
>not have hypospadias.  He spent 5 days in 
>NNICU.  After he was born, they told us a whole 
>litany of things that could be wrong with 
>him.  Our milestones have come in 
>intervals.  They said that he wouldn't likely 
>survive 10 days and sent us home with hospice 
>with a DNR.  The next milestone was 2 months 
>when we decided to take him off hospice care so 
>that we could pursue palliative care.  The next 
>milestone was 3 years when they said that if he 
>could make it that far, they would respect his 
>will to live and not use the term "failure to thrive."
>
>
>
>So for his 3rd birthday, we had a big blow 
>out.  We pulled out all the stops.  He feeds 
>himself, he helps his mommy clothe him.  He 
>crawls and pulls himself up to a standing 
>position and cruises the furniture.  He says 
>Momma and Dadda and loves his grandma.  He is 
>funny and cute and has the most infectuous 
>giggle that we love hearing.  He is a blessing 
>and a joy.  He has his delays, but he is a 
>beautiful child.  Best things are yet to come 
>when he starts school in the fall.
>
>
>
>All I can say is be good to yourself be a strong 
>advocate for the health of your child.  Eat 
>hardily to give your baby a good start and get 
>his birth weight up. (worry about the baby bulge later)
>
>
>
>You are more than welcomed to call my daughter 
>Dana.  You may e-mail me off list for her phone number.
>
>
>
>Look forward to hearing more about you and Abram.
>
>
>
>Doretta
>
>Grandma to "B.E.A.N"
>
>Trisomy 13 born June 9th, 2006
>
>
>
>
>
>
>
> > Date: Tue, 9 Jun 2009 20:52:18 -0700
> > Subject: [tri-med] Preparing for our son with Tri9p
> > From: melodylickert@xxxxxxxxx
> > To: Tri-Med@xxxxxxxxxxxxx
> >
> > Thank you so much to all the people who have responded to my post so far. I
> > have loved finding out more about your families. You all have been so
> > encouraging and supportive. Our son, Abram, will be delivered at the
> > University of Washington Medical Center and they have been really great so
> > far. They have really supported us along the way and everyone is such an
> > expert because they specialize in high risk pregnancy. They admit that they
> > don't really know what to expect with little Abram till he is here.
> > They can only give their best guesses, but they seem as hopeful and
> > committed to him thriving as we are. I look forward to getting to know you
> > better and hear from others! Thanks again
> > Melody wife to Jason, Momma to Mya Elizabeth 19 months, and Abram James Due
> > July 8th Trisomy 9p
> > Seattle/Tacoma WA
> >
> >
> > 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
>
>
>
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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

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