Here is Nathan, birth to 3 years. I look at Bennett right now and can't believe his face may change like Nathan's did. I am feeling better today I think. I am overwhelmed at the thought of doing early intervention again, but feeling okay about my kids looking different. I am thankful that Nathan has normal cognitive functioning and most of the time can just be a regular kid. I am thankful that we didn't find out at birth that Bennett has what Nathan has. That way I got to slowly realize and begin to accept the news. Had I been told at or before he was born, I would probably be in a psych ward somewhere. Nathan's endoscopy is rescheduled for 3/23/09. I am beginning to think that he has Acrogeria. He looks so much like the children with progeria, but yet his lamin A gene was normal. I found an article about Acrogeria and skeletal changes which sounds exactly like Nathan. It talks about small feet and hands, wormian bones, acroostolysis (sp?) joint problems, sclerodermoid skin changes, triangular face and pinched, bird like nose. It also describes these children with normal appearance at birth and then it slowly becoming apparent. The problem is there is very little information about the condition because it is so rare. It seems even rarer than Progeria.