I know some were wondering what our decision was on Chicago and at this time we have decided it is not the time to go.
I am aware that the doctors there are researching to find a gene linking a child to ROHHAD Syndrome. This requires us to take the PHOX2B blood test (costing $400 - which insurance doesn't pay) and have that sent to Chicago. Once they screen the blood we would then have to go there for a week of extensive testing. I don't even believe Haven could perform all the tests - she gets too worn out. They would also do a week long sleep study.
Maybe it would benefit everyone later - but it has no benefit to Haven now. It wouldn't change her current treatment that Johns Hopkins is doing. Especially since there is no treatment or cure for ROHHAD. Insurance also does not cover us going to Chicago for this testing - and with the testing costing around $150,000 (estimated).
So for now we will skip out on Chicago and continue to keep in close contact with all of our doctors here.