Donna64, We had no idea that she would have THES. She just had to be on supplements, was really small, didn't gain weight very well, and got sick easy. The exome sequencing was the last ditch effort. Our test took exactly 15 weeks and it was done at Baylor Genetics in the US in the state of Texas. Without insurance it would have cost us $7000, but we got lucky and it was covered completely by insurance. I'm sorry to hear that your grandson has not been able to have food by mouth. We've been lucky. She has been on this formula called Nutramigen and has been taking puréed fruits and veggies by mouth. She doesn't gain weight well. Pretty much a consistent 15grams a day. She was born at 1.076kg and is now at 4.57kg at 11months.