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Family Resources: Archived Resources

Kylie Sheffield wrote a book about her experiences titled "Not Compatible with Life: A Diary of Keeping Daniel." You can download it here in PDF format (3.3 MB)

Intensive Cardiac Management In Patients With Trisomy 13 or Trisomy 18: Intensive cardiac management and palliative or corrective surgery is a standard treatment for congenital heart defects. However, for children with trisomy 13 or trisomy 18 syndrome, it is controversial due to low survival in patients with these trisomies. The authors reviewed data for 31 infants with trisomy 13 or trisomy 18 between 2000 and 2005. Hospital policies differed across the six year period. The median survival times of 13, 9, and 9 infants from the first, second, and third periods were 7, 24, and 243 days, respectively. Intensive cardiac management consisting of pharmacological intervention and cardiac surgery was demonstrated to improve survival in patients with trisomy 13 or trisomy 18 in this sample. This data can be used by parents and professionals in deciding optimal treatment for infants with these trisomies.

December, 2007 - Social-Emotional Skills

October, 2007 - Cognitive Resources

September, 2007 - Communicating With Your Child

Summer, 2007 - Museums

May, 2007 - Summer Family Vacations

April, 2007 - Computer Games and Software

March, 2007 - Feeding and Dining Part 2

February, 2007 - Feeding and Dining

January, 2007 - Transportation Safety

December, 2006 - Holiday Gifts

November, 2006 - Walkers, Standers and Gait Trainers

October, 2006 - Assistive Technology Devices

September, 2006 - IDEA Resources

August, 2006 - Sibling Support

June - July, 2006 - More Summer Fun Ideas

May, 2006 - Fun in the Sun

April, 2006 - April Adventures and Activities

March, 2006 - Money Saving and Life Care Information

February, 2006 - Fun Indoor Activities Part II

January, 2006 - Fun Indoor Activities Part I

December, 2005 - Holiday Gift Ideas

November, 2005 - Fast Eats and Crafty Thanksgiving Treats

October, 2005 - Costumes

September, 2005 - Back to School Links