There are so many things to update!  I'm sorry it's been a couple of weeks since my last post. We've been swimming in paperwork trying to follow up with the genetic recommendations.  Stanton's latest genetic lab work showed abnormalities in his plasma, carnatine, enzyme, organic acids and fatty acid levels.  The report suggested we see someone who specializes in metabolic disorders.  The referral to the bio-metabolic genetic clinic at Tulane University was finally sent over yesterday.  After calling and calling and getting no where, John faxed all 41 pages of the genetic report to our pediatrician.  That seemed to get the office's attention!  Tulane is to call us for the appointment.....so we're just waiting.
 
Stanton finished his round of antibiotics this past Sunday after aspirated a couple of weeks ago.  And now is sick again!  However, this latest episode didn't end up in his lungs....thank goodness.  He just looks like he has really bad sinus/allergy gunk.  His eyes are bloodshot, puffy and watery; his nose is constantly running clear and he's sneezing and coughing his head off.  He's pretty miserable.  I took him to the doctor this morning just to be sure all was okay - and she said to just give him Zyrtec. 

We leave next week for Cincinnati Children's Hospital for a week full of tests.  I hope Stanton is in better health before we board the plane!  I'm also hopeful for some real treatment options.  We've been giving Stanton the medication for delayed gastric emptying and I just can't say I've seen a real difference.  Thank you all so much for your encouragement and prayers as we continue down this winding road!
~Ginger