Tuesday, April 24, 2012

Information overload

Down syndrome is the most common chromosomal abnormality, occurring once in every 690 live births. This means lots of available information and resources. Before we even left the hospital we had been referred to Mile High Down Syndrome Association, referred to a pediatric audiologist, and set up with an early intervention coordinator. At Daniel's first pediatrician's appointment we got a referral for a pediatric ophthalmologist along with a list of common health concerns and a timetable for testing for them.

MHDSA has been GREAT. We got a call from their family outreach coordinator just a few days after we were referred. She offered us their welcome package, to put us on a mailing list, to put us on an e-mail list, and a "first call" contact in my area. (Yes, yes and yes please!) I've already read the information book from the welcome package. 

See, I'm sort of an information junkie. I read. I research. The engineer in me wants numbers and data and statistics. And the mother in me wants to hear everyone else's stories about what it's like to raise a child with Down syndrome.

Anyway, there's a point to all this. For those of you who have contacts for me or other info, I want it, I do. But I'm a little overwhelmed with all the info I'm currently making my way through, especially since it turns out I also have a newborn. (Crazy, right?) So hang on to the phone numbers and e-mails addresses and such for me. I'm sure I'll be asking for them soon enough.

P.S. The love and support from everyone, both in real life and online, has been amazing. You guys are the best.


  1. It's because we love you and your family.

  2. I will count on you for statistics but I'm interested in reading some of the books you have about people raising DS kids!

  3. I bet that can be overwhelming, especially with everyone trying to help at once.


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