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

Doretta,
Happy Birthday to Bryson and thank you for sharing his story with me.  It is
so encouraging to hear how he is doing.  Fort Lewis is just down the road
from us!

Melody

On Thu, Jun 11, 2009 at 4:07 PM, D McHugh <dori_m@xxxxxxxxxxx> 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
> >
>
> _________________________________________________________________
> Hotmail® has ever-growing storage! Don?t worry about storage limits.
>
> http://windowslive.com/Tutorial/Hotmail/Storage?ocid=TXT_TAGLM_WL_HM_Tutorial_Storage_062009
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
>

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: