Good Timing

The good thing about being in the hospital today was that I got to meet with Karlene Coleman, a certified Genetics Counselor who works with Dr. Kobrynski.  It was so great to meet with her and talk about Riley & 22q in general.  I was asking what to expect from out appointment with Dr.Kobrynski in August (which we are still on the waiting list for) and she said that (a) it will be a long appointment (b) there will be lots of paperwork and most importantly (c) Dr. Kobrysnki will do a thorough screening of Riley, basically head to toe so that she can do a proper assessment of Riley's condition.  Karlene also said that after 12 months, we'll be seeing the dentist in that group and the Cardio-Facial doc as well, all of whom have been specializing in 22q since about 1995.  It is so great to be in an area where we actually have specialists well versed in this syndrome and that we have places to turn for help.  I am eagerly looking forward to the 22q at the Zoo Wold Wide Awareness Day (buy you t-shirt on line at http://www.22q.org/ on the events tab to help support the cause!!!!) where we'll be able to meet with other families in the same boat as us.  Karlene is talking about setting up a local blog where families in the area can post the questions & concerns and get feedback from the other families. I think that would be an awesome avenue to talk things out.