22q Blog Posts
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'Transitions' by a 22q Mom
May 5, 2014
Man, I've been struggling with this concept of awareness. This is due mostly to a few highly effective friends who have been explaining about their heart defects first hand, or chronicling their journeys as parents daily. Today, Aidan, in his incredible way, hit upon what I need to talk about just...
#22qAwarenessDays
April 27, 2014
Take a moment to "like" the 22qAwarenessDays page on Facebook.Early last week we received an email from 22q Mom, Raj Hemus. Raj was seeking help from all 22q/VCFS&DiGeorge organizations, experts and community members. Her idea was to expand upon the inevitable awareness from upcoming 22q At The...
How to Organize a Medical Binder for Your Child
March 24, 2014
I plan on doing more posts to help others who are dealing with medical health issues.
Bella sees one of each type of medical specialist. It feels overwhelming trying to remember who is who and what doctor ordered which test and which lab went were and who prescribed the medication if you lost or...
"Rare"... To be or not to be?
February 24, 2014
"Rare" To be, or not to be... Rare? THAT is the question.{Originally posted Feb 28th 2014}Every year when "Rare Disease Day" rolls around I get the same type of inquiries. "22q isn't really rare. So why are we (you/the 22q community) taking part in "Rare Disease Day"". I typically end up...
Feeding tube – we forgot to have a party
February 22, 2014
"Feeding tube – we forgot to have a party" Excerpt from The "Caring for Monica" by Lisa JenningsThe non-event is a special thing… We’ve been in crisis mode quite enough, thank-you-very-much. Sometimes treating the most extraordinary things as normal, well that’s just what we do. Except for that...
Peter Gammons: Ryan Dempster at ‘peace’ with decision
February 17, 2014
It was the off-day between the Tampa and Detroit series last October, an off-day for most players. Two or three stopped by Fenway, but by 5 p.m. they had left. I was there to do a couple of live hits from the MLB Network camera at the visiting dugout, waiting in the dugout, when Ryan Dempster and...
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