6 degrees and a missed connection

Everybody knows someone who knows someone...
It's been proven to a degree we're all connected. Some say by as little as 6 connections. Check facebook, linkedIn etc. we are all connected. need proof? check your friends lists. or even better see who shares your pediatrician. It will blow your mind.
This is where our journey intersects. Some people I've "met" and have been real friends with for a long time. Our friendships have been more real than some of my local friends,and although we've never met face to face...If they needed me to I'd hop on an airplane and try to be there if I could.. We've shared life. Our struggles, our victories, our sorrows, even some real secrets that not even best friends would share.

Which leads me to the thought Okay if we're all connected and know someone, why is it I feel like I'm spinning my wheels,so to speak, when it comes to finding a pediatric  specialist who can answer some questions about what Jonathan is going  through.
Someone has a great developmental or Genetics specialist who specializes in super rare genetic disorders.  Our is 21q22.11 deletion.. We've been told there are a handful of people around the world who have this "change", but he and I are the only ones that have experienced any issues that can be tied to it.
 Please Feel free to share our story. At this point we've totally hit a DEAD END.



We live by DFW airport so we would be willing to fly somewhere for a consult.
You might as well have told my husband and I that this diagnosis totally means nothing, and means that we are totally unable to talk to any specialist in the Dallas-Fort Worth metroplex....

Map

Yes,I said metroplex. Where I live there are not one, but TWO very large cities near us (almost equal distance between the two).  What I am finding is there is very surely no shortage of pediatricians in the area, There are 2 major Children's hospitals...BUT there are only 2 very little (and very full) Developmental and Behavioral Pediatricians...and only 2 genetics programs here. Dallas Children's Hospital only serves developmental peds. patients until they are 5... where they go after that who knows. Maybe someone thinks they all vanish or maybe they send all the over 5 to psychology/Psychiatry. We've been turned away from that as well due to lack of space.

I'm going to scream. For real. as of right now I think we're still on a waiting list...unless something purely diabolical happens and I just end up firing our pediatrician. That is always a good option as the one we have is HORRIBLE and their staff sucks. all this pediatrician knows to do is follow a checklist..no bedside manner at all. I've suffered through a lot of different docs... this one is in the running for the worst...okay second worst. The neurologist  we saw whilst getting Jonathan's diagnosis was BAD.

This all leaves me feeling very frustrated and feeling like the only person moving to Texas benefited was my husband. Yes, there are plenty of new jobs here, if you are willing to take the risk and move here. But if you have a child with a chronic condition...You might want to weigh your options very carefully.

Now we live another day to fight on..  Be blessed while we start at square 2 (square one has already been done),