» Category Archives: Medical

How to Love Medical Records

May 12, 2011 Kyron No Comments

A few years ago I wrote a piece about Medefile. As a matter fact it was probably one of the first pieces I did on this blog (January 2008). Medefile is a fee based service which helps gather medical records, digitize, organize and store them online – giving you access to these records 24/7/365, anytime, …

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National Healthcare Reform and individuals with special needs

May 12, 2009 Kyron No Comments

I was pleased to receive notice about a speech an amazing woman, Julie Beckett, gave recently to a group in Madison, WI (I am so going to have to get up there someday with the excuse of visiting my brother) Julie is mother to Katie, who contracted viral encephalitis when she was 6 months old. …

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How did we get here?

January 8, 2009 Kyron 5 Comments

Katherine’s pancreatitis continues to have long reaching complications. Not only has her way of life had to change, not only has her look changed from the drastic weight loss she has encountered, but her look is about to take yet another turn. Her GI who I love is telling us that Katherine needs a G-Tube …

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Just In Case

July 21, 2008 Kyron 2 Comments

I just spent the past week at Childrens Healthcare of Atlanta – Egleston on 5West (big shoutout to the great staff there!!) Katherine developed what we believe to be acute (rather than chronic) pancreatitis. And if that wasn’t enough to cause this poor kid enough insane pain to break my heart she also had a …

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Glasses for Children with Down Syndrome

June 20, 2008 Kyron 11 Comments

I came across this on one of my listserv’s and thought it was useful information for some of you. Hello, my name is Maria Dellapina and I am writing to inform you about an opportunity to enhance the lives of the children we spend our lives advocating for. I am a mother of an nine-year-old …

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Caregiver Stress and 5 minutes

May 16, 2008 Kyron 4 Comments

As parents of special needs kids, no matter the age, many of us do far more care tasks than we might otherwise with a child of the same age. Whether it’s because your child has physical limitations or intellectual limitations it’s really immaterial. The reality is that sometimes the toll of this care sneaks up …

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Good things come to those who wait….

May 2, 2008 Kyron 1 Comment

Well ain’t that the truth! We’re in the clear on the kidney. Apparently what was seen on the ultrasound was some kind of shadow or something and her kidneys are FINE. The past week has been pretty amazing. The thought that there could be something really wrong rocked me to my core. It made me …

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