Thursday, November 06, 2008
Settling in Back Home
I've met some awesome people through Riley's journey in the past year and a half. It's not often that I get to meet these people face to face! Well, today, that changed! Dawn is the mom of a sweet boy named Cole. Dawn emailed me months ago after reading my blog to let me know her son had the same syndrome Riley does (Pfeiffer) and we realized that she lived only a few miles from us!! We moved to NC, and were never able to connect, but when Dawn read we were moving back, she contacted me about arranging to meet, and today we made it happen!! We met at a sweet new park in Rancho San Diego. Dawn also arranged for Alicia to meet us for the play date. Alicia's son Dominick was featured in a news article a couple months ago. Dominick has Crouzons, which is a syndrome closely related to Pfeiffer. It was so awesome to be able to connect with other moms who have been through the same journey I have with Riley! We talked about our babies the whole time and they wore themselves out playing in the water and all over the playground! I'm looking forward to connecting with Dawn and Alicia again soon!
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Hi Lauren! My son, Benjamin was diagnosed with cranio a year ago. He is now 18 months old, and doing beautifully! I just found your blog, loved your stories, and wanted to share my stories too. Feel free to see Benjamin's blog at:
allaboutbabyk.blogspot.com
Best wishes,
Kierstyn in Texas
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Here is some additional information about the "genetics" of this condition that was written by our Genetic Counselor and other genetic professionals: http://www.accessdna.com/condition/Craniosynostosis_Syndromes/107. I hope it helps. Thanks, AccessDNA
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