Monthly Archives: July 2010

Celebrating A Milestone

July 29, 2010 marks 13 months of Karis’ precious life.  Today is the day that we were told to dread on December 4, 2009 when Karis was diagnosed.  The average lifespan of a baby with early infantile Krabbe (just like Karis) is 13 months (though some statistics are now saying 14 months).  Please join me in […]

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The Journey Home 7/25/10

Reflecting on today all I can do is laugh at the absurdity of it all. It’s okay though, because God planned each moment before there was one of them Today reminds me of the Caedmon’s Call song that says, “Well this day’s been crazy But everything’s happened on schedule From the rain and the cold […]

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Day 4: Every Step Walk 7/24/10

After the prayer party this morning we met for the Every Step Walk for Newborn Screening by the lake.  Before the walk, families who had lost their children to Krabbe wrote messages to them on balloons.  They stood by the lake and everyone released their balloons together to commence the walk.  This was the hardest […]

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Day 3: Family Lectures at Symposium 7/23/10

Today we got the chance to get better acquainted with our friends at Symposium. After Prayer Party we started the day with a family panel who discussed how families can be advocates for their children and how to be better aware of their rights (such as education and therapy). Karis bonded with her new best […]

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Day 2: Medical Lectures at Symposium 7/22/10

This morning started with an 8:00am lecture by Dr. Joanne Kurtzberg from Duke on fetal transplant. She gave us an overwhelming amount of great information on fetal transplantation, which is a realtively new concept. Basically fetuses in the first trimester are tested for Krabbe disease and if the test is positive, they do a cord […]

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Day 1: We Made it to New York! 7/21/10

The morning of our trip to New York began at 3:30am for me… but only because of a little insomnia. I got sweet Trevor out of the bed at 5:30am to take us to the airport. Karis must have heard because she decided to pop open her precious little eyes so I could change her […]

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