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Trisomy 13 - Patau Snydrome - Photos, Support and Resources

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Trisomy 13 Support, Information, Resources,  & Links

For PRENATAL SUPPORT CLICK HERE

TRISOMY SUPPORT General Support & Information about Trisomy 13

Immediate Support  Please click here.

Other Trisomy Photo Sites - Families sharing their stories & pictures,

Photographers who provide complimentary services

Other Helpful Resources for Special Needs Children

Finding Doctors & Midwives

 

Other Helpful Resources for Special Needs Children

WISH Organizations (Some are STATE specific)

Are you in need of a vacation to spend time with your typical kids?
VIVIAN'S HOUSE RESPITE CARE Centralia, Washington USA
Respite: an interval of rest and recovery. Vivian's House provides respite care for medically fragile and disabled children with special health care needs. Parents and caregivers can bring their children to us for safe, nurturing care. We serve children from Lewis County and other surrounding counties.

Pro Healthcare Products  Medical Supplies at Affordable Prices – Adaptive equipment for special needs

Alternative Therapies (Thinking outside the box) Beneficial Therapies

Exceptional Parent Magazine

Celebrate Differences "Celebrating the Abilities of Those with Disabilities" - Nice listing of support resources

After the birth of Anna, Mom, Sarah, was inspired to begin a business and ministry...B is for Baby, Blankets and More" hand-made baby and toddler items made with a mother's love.  On behalf of each order received, an item (i.e. burp-cloth, bib or blanket) will be donated to a local hospital; to be distributed to babies with special health issues, babies born premature or families in need.

Medela Special Needs Feeder - Formerly Haberman FeederHaberman Feeders
In cases where babies have severe feeding problems, such as with Down Syndrome, cleft lip/palate, neurological dysfunction, disorganized sucking symptoms and others, the Haberman Feeder offers an alternative to spoons, enlarged and/or extra holes in the nipple, and nasogastric tubes. The Special Needs (Haberman) Feeder is so effective and easy to use that it can actually change feeding sessions from a difficult or even traumatic experience into a pleasurable activity for the mother and baby. A specially designed valve and teat adjust milk flow to suit baby's needs. A one-way valve prevents flooding and overwhelming the baby. If the baby cannot nurse at all, or just needs a little help, the bottle can be squeezed to release a limited volume of milk.

New Signing Time! TV Series Now Available from American Public Television Children Learn a ³Hands On² Second Language

Hear Jim Gill's Music - Click on each album to hear audio samples! Jim has produced five recordings of music play for young children and families. Scroll down to see track listings and listen to samples.

 

Special Clothing for G-Tube fed childrenn - Tummy Tunnels is a wonderful idea to hide the needed cuts in clothing for the G-tube fed children

G-Tube Fed Clothing Extenders from One Step Ahead Add-A-Size Garment Extender 10-Pack

Home Page Heart LogoCongenital Heart Information Network - C.H.I.N. is an international organization that provides reliable. information, support services and resources to families of children with congenital heart defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them.


pr_bottles_and_nursers.jpgEnfamil Home Delivery - Cleft Lip/Palate Nursers are specially shaped, flexible nursers with an elongated nipple which allow controlled formula flow and assisted feedings.

 


MULTIPURPOSE MOISTURE BARRIER - TEMPORARILY RELIEVES DISCOMFORT & ITCHING - CALMOSEPTINE OINTMENT IS AVAILABLE WITHOUT A PRESCRIPTION
EASY TO APPLY - ONE-STEP PROTECTION - COST EFFECTIVE - TIME SAVING
Protects and helps heal skin irritations from:
Incontinence of urine or feces
Feeding tube leakage
Minor burns, scrapes
Fecal or vaginal fistulas
Wound drainage
Diaper rash
Moisture, such as perspiration

Blenderized-Diet YaHoo Group group motto is: Real food for real people works real wonders! This group is to help provided education and advice for families and professional's who have family member's or patients who received food / formula via a G-tube, J-tube, or NG-tube. This group also provides help and support in learning how to do "Blenderized Diet" via a feeding tube. This group will be open to ONLY parents, caregivers, doctors, nurses, and RDs who are here to help.

 

 

 


 

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

 

 

All text and graphics © LivingWithTrisomy13.org 2005-2010 - all rights reserved
Use prohibited without permission
All information found on this site was submitted to us directly by the families
and used on this site with their permission.

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.
 
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy 13 (Patau Syndrome) - 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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