John and Naomi saw the genetics team at Children's Hospital today. was told that they don’t have any more risk of having more kids than the general population. They want to have another child when Alex is about a year old.
Said the mutated gene that Alex has was only discovered in the past five years. if Alex had been born 6-7 years ago, he might not be here, because the doctors would not have treated it properly. and said omegaven (nourishment suppliment) has been the turning point for MMIHS patients…. Alex had a touch of jaundice a few weeks ago and they started him on omegaven. his jaundice disappeared in days. Docs said liver damage is a killer of these patients. What is interesting, is they omegaven from Children’s at no cost cause it hasn’t been approved by FDA, so Children's gets it from Germany. Manufacturer doesnt charge because they want to use patients as trial studies.
Alex was also born with a badly swollen right kidney, which the docs had been concerned about. He had a check up by kidney specialist and the kidney is almost normal size now. One less thing to worry about.
