Back to the drawing board...

Javy's geneticist called today to give me the results from his last round of testing.  The test results that I mentioned in "The Big Doctors Appointment", here's a link if you're interested: http://adventuresinjavyland.blogspot.com/2013/05/the-big-doctors-appointment.html

So all the tests came back normal.  At first, I would've made a flat tire sound here.  When I got the message, I have to admit, I was a little disappointed.  I really thought we were heading somewhere.  But after talking to the doctor, I realized it was really a blessing.  What the doc thought he had iscalled Lesch Nyhan disease.  Its trademark symptom is self mutilation to the point of biting their tongues off and pulling out their eye lids.  People with this disease have to be bound sometimes to keep from hurting themselves.  The doctor said that the uric acid builds up and the toxins in their system cause them to regress.  

I guess, this is when parents with undiagnosed children walk the tight rope.  I was hopeful that I would be able to put a label on Javy and tell people my son has such and such syndrome.  Even become an advocate for that syndrome.  But it wasn't meant to be for us, just yet.  Bottom line is, it doesn't change anything.  We still just got to treat the symptoms and remember not to underestimate him because this boy surprises us everyday.  We got to appreciate everyday that we're given and not taken anything for granted.  To quote my wise mother when I told her the news today, "Good!  We didn't like that one, anyway!"