Tag Archives: Susan May

Lifelong care for Adolescents and Adults with a CHD

As people born with congenital heart defects (CHD) age, there are a variety of occurring issues that are not often well understood. These include your emotional and social needs; the benefits of exercise; living long enough to develop new health … Continue reading

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New Research: Use of Special Education Services among Children with Congenital Heart Defects

  New CDC study findings in the August 17 issue of Pediatrics show that children with congenital heart defects (CHDs) received special education services more often than children without birth defects. These findings highlight the need for special education services … Continue reading

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My Mother’s Day Gift

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Symposium – Congenital Heart Disease

June 26-27, 2015 (Orlando, FL) In this one-of-a kind national congenital heart disease (CHD) Symposium, parents, caregivers and family members will learn the latest information on caring for their CHD child and new medical treatments to help them as they … Continue reading

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Report on congenital heart surgery outcomes is made available to public

  The Society of Thoracic Surgeons has made public its first report of pediatric and congenital heart surgery outcomes from the Congenital Heart Surgery Database. The report included four-year observed, expected and risk-adjusted center-level surgery-related mortality rates for the aggregate … Continue reading

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New Affordable Care Act Fact Sheets for Families

Created by the National Center for Medical Home Implementation and the Catalyst Center, these four fact sheets highlight provisions of the Affordable Care Act which benefit children and youth with special health care needs. Each fact sheet is written in … Continue reading

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Celebrating 23 years with a Heart Transplant

Nick celebrated his 23th year with a heart transplant this week. He says the longest living made it 31 years and died of old age. He wants to surpass that and more. I want that also. Thanks everyone for the prayers … Continue reading

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Halloween Trees?

On a recent visit to the west coast I was fascinated by the amount of Halloween decorations were in the store windows and even the hotels. The favorite decoration seem to be a big black rat. Nasty. They were everywhere. … Continue reading

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Chilhuly Art

In Seattle next to the Space Needle is the Chilhuly Garden. It was  amazing!!! If you are not familar with Dale’s work it is all done in glass. The is a piece of his work at the art museum at … Continue reading

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Visit with Michelle

On a recent visit to Seattle I got to see and have dinner with one of Nick’s nurses. I haven’t seen her in over fifteen years. She was not only his nurse as a bay but also a transplant coordinator … Continue reading

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