My thought in reading the first post was despite the horrible conditions of  
the birth, that perhaps, the mom and others should focus less on that and more 
 on the infant him/herself.  The birth certainly could be a factor in the  
infant's current state, but it sounds like there is much more going on here than 
 that. I guess my plan in a case like this is working from the current  
situation backwards.  You know what happened at birth, but in the meantime  you've 
got so many other immediate issues to deal with and I think to  myself "I 
can't let this one bit of knowledge color anything I might  find or anything else 
I might look for".
 
 I have had similar circumstances in working with mothers who  struggled for 
months to get answers to questions similiar to these only to find  their child 
had an extremely rare genetic disorder.  My thoughts would be  to see a 
couple of pediatric neurologists, a pediatric  endocrinologist, seek genetic 
counseling, now, and in the meantime the  pediatrician or neonatologist could help 
by ordering physical therapy for the  hypotonia and hypertonia issues, possibly 
CST or an OD to look at the cranial  overlapping, and speech therapy to help 
develop the baby's facial muscles.   Whatever the issue turns out to be, 
neither of these allied health care  therapies will hurt the child.  Provide them 
all with reports from the  neuromuscular therapist (who, by the way, concluded 
what?)
 
This infant is lucky to have a proactive mom and you on his team.   Keep up 
the good work, and please, keep us informed.
 
Barbara

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