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Sofia Holden Peabody Waters |
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Born: September 25, 1998
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Costa Mesa,
California (CA) - Full Trisomy 13 |
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  6
years, Full T-13.
Sofia walks with a walker, eats finger foods independently, eats with a
spoon if assisted, and loves to be outdoors. She attends a special needs
first grade and loves it. Mom is Lucy and Dad is Carleton, little sister is
Geneva.
Costa Mesa,
CaliforniaThe Waters Family
Click here to E-Mail
submitted:
10-18-04 |
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Sofia is a delightful, cheerful, and motivated
6-year old. She walks unassisted with a walker and cruises around the house
holding onto furniture and sometimes scales the walls. She can feed herself
finger foods and is nearly capable of feeding herself with a spoon. She
learned to hold her sippy cup by the time she was two and is now a voracious
milk drinker. Sofia loves parallel play with adults and other children. Her
favorite activity is sliding down the playground slide headfirst. She is not
shy and will crawl up anyone’s leg for attention. She weighs a mere 33
pounds and is about 36 inches tall. Her therapists estimate she is
developmentally similar to an 11 month old child. As her mother I am a
little biased, but she really is adorable.
Sofia wasn’t always so mobile and social. She was born at 38 weeks gestation
and was only 4 pounds 7 ounces. She was diagnosed as Trisomy 13 when she was
delivered. The ultrasounds did not show any anomalies in her spine, heart,
or other body parts that would indicate an abnormality in her development
during pregnancy. After Sofia was born, the nurses rushed her to the
Neonatal Intensive Care Unit solely because she was Trisomy 13. The only
outwardly visible indications of problems were the ulcer on the back of her
skull, six fingers on each hand, and six toes on her left foot. We were
fortunate that she did not have a cleft palate. She was born with a
beautiful little angel face.
After 5 days in the NICU, the doctors reported the only serious problem they
could find with Sofia’s anatomy was that she had too much water in her
kidneys. So we decided to see how she would survive without the oxygen and
heat in her incubator. We waited and watched her for an hour after they
removed her from the incubator. She thrived. We finally took her home and
began our journey into a land we had never been to and we did not have a
map.
 When Sofia was 9 months old we almost cancelled our trip to Scotland because
we were afraid of the challenges of traveling with her. We decided to be
brave and go on the trip. Our first stop was a visit to Nana’s house in
Boston. When we arrived in Boston, Sofia had a raging fever and was quite
distraught, so we went to the ER at Boston’s Children’s Hospital. Sofia had
a horrendous bladder infection and spent 5 days in the hospital on
intravenous antibiotics. Every curious doctor and intern came to view her
and grill us with irritating questions like, “are you sure she is full
trisomy 13?” We were insulted several times by their callous questions but
realized that they were amazed by how healthy a trisomy 13 baby Sofia was.
Their textbooks said Sofia should be disfigured and near death but they saw
this adorable, thriving little baby in the bed. The doctors encouraged us to
continue with our travels because Sofia was on strong antibiotics and was
recovering quickly. We went to Scotland for a week and had a fabulous time.
She loved car rides and was quite content to sit in her car seat and watch
us enjoy the country side.
Since then, Sofia has been to the ER several times for bladder infections,
upper respiratory infections, and seizures. When Sofia was two, she had
surgery for ureter reimplantation because her urine was refluxing back up
into her kidneys. She no longer has reoccurring bladder infections but we
continue with annual ultrasounds on her kidneys.
When Sofia gets sick it usually settles in her lungs. The doctor thinks this
is because she is not active enough to move the mucus out of her lungs. Now
that she is more active she has fewer episodes of bronchitis and respiratory
infections.
Sofia suffers from severe constipation because her bowels are rotated. Every
morning we give her a laxative and periodically adjust the dose. This helps
but we have not yet found a satisfactory solution. We continue to experiment
with adjusting the dose and changing medications.
She used to have seizures that scared Mommy and Daddy more than they harm
her. Now she is on seizure medication that works quite well and also seems
to help with her concentration and patience.
We continue to learn more about Sofia’s medical needs. As she develops, new
problems arise. We have learned to be patient and to watch her body language
for signs of discomfort. The doctors claim to know everything but really
they know nothing. They rely on the reports from Mom and Dad. It took us 2
years to learn Sofia’s true needs and the doctors’ limitations. As the
parent, you are the best caregiver for your child. The doctor’s can
prescribe tests and medications to assist you in taking care of your child
but they need your knowledge of your child to help you. Don’t despair, after
the first 2 years of learning your child’s needs, life becomes a lot easier
and much more enjoyable.Lucy and
Carleton Waters
Click here to E-Mail
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Living with Trisomy 13
Focused on prayerful support and gifts of love
to those touched by a Trisomy 13 child.
Inspired By An Angel
Attn: LivingWithTrisomy13
15802 Springdale St.. #68
Huntington Beach, CA 92649
info@LivingWithTrisomy13.org
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Text and graphics ©
LivingWithTrisomy13.org 2005-2007
All information found on this site was submitted to
us directly by the families and used on this site with their permission. |
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Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela
Sullivan 2004, used with permission. |
If We Hold On Together Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.
Used with permission.
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*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy
13 child. It is not meant to replace any medical advise of a professional
familiar with your specific condition. The personal journeys of any parents on
this site are only their opinions and their own journey with having a Trisomy 13
child. You should consult with your own physician or other medical professional
regarding the opinions or recommendations expressed within these pages as to
your own child's symptoms and medical condition. |
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Looking for ALL families who’ve had a trisomy child of any number.
Whether you terminated, miscarriage, had a stillbirth, live birth -
living or deceased. Including adoptive and Foster parents. Please fill
out the
TRIS survey
to help update the medical literature and to improve the quality and
availability of medical care. Tracking Rare
Incidence Syndromes (TRIS)
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Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
