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Here we are in NYC at Columbia Medical Center waiting to see our neurologist. The place is very academic, not at all fancy hospital-like.
We did a medical consult in NYC (Columbia – Presbyterian) with a leading neurologist and she immediately picked up some abnormality on Edda’s MRI which is usually associated with lack of oxygen at birth or preemies, but Edda had a 10 minute birth – planned C-section – so we aren’t sure where it came from. So this NYC neurologist thinks it’s a static problem and it’s only improvement from here on out – no future medical problems or degeration of skills. Which is a relief. The Singapore neurologist and radiologist saw no abnomalities on the same MRI and are suggesting genetic possibilites (Rett’s syndrome (Edda exhibits mouthing and is socially withdrawn which are some of the markers for this) or metabolic syndrome both of which we couldn’t test for in SGP). So we are awaiting the blood/urine (they took about 12 vials of blood for the “rare diseases” screen) test results for the genetic/metabolic stuff from NYC as well as a 4th opinion (NYC radiologist) on the MRI. So we will see. So it’s not everyday where a parent gets news of a brain damaged child and says “Hooray”, but that is pretty much how I felt that day, to think that Edda can only improve and not have any future medical problems was such a boost.