Tuesday, January 8, 2008

Heart Kids 'Community'

Yesterday Wren and I went to our monthly CHD family support group which meets at Children's Hospital. Wren was a noisy explorer. He wanted to eat chocolate, drink juice, climb on the table and hoot loudly. He picked the noisiest toys to throw, thunk and beep with. It was a good meeting (as always) although I was the only one who actually ate chocolate. A new family attended for the first time. They have twin 5 month old girls, one of whom has DORV, TGA, VSD and ASD. She has had some procedures but they are waiting on the major repair. It is always hard to be in that waiting part but I hope it goes smoothly for them.

Meanwhile, I have been following another Heart Baby blog. Baby Justin, who has had the first of the three surgeries pre-Fontan, is also 5 months old and is due for an exploratory cath tomorrow. I am sure his family would appreciate positive thoughts and prayers.

Finally, I was told that February 14th (yes, its Valentine's Day) is CHD Awareness Day. As the the Congenital Hearts Information Network reminds us:
"
CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths."


We talked about doing some publicity for the day in Seattle but we are not a particularly press-savvy bunch so we were not sure what steps to take. We are going to try and publicize our Heart to Heart group as a way to reach out to families with heart babies to offer support.

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