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

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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                  Families Helping Families On-line

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