The briefest of updates, as I'm dead tired and ought to be in bed!
Today we started DSI therapy (play therapy) with baby - today was just the interview/evaluation, so the real thing will start in two weeks. We have a very sweet therapist.
Today we also saw baby's ped for his 1-year check-up (we're super-late). My most important/urgent question for him was - Do we, or do we not, need to do the GI test and the brain MRI? His answer was a reluctant, "Yes, do them and do them now" - reluctant because he dislikes the tests as much as I do, but he does believe that they are necessary. His word is good enough for me, so we are now in scheduling phase.
Then lastly, an interesting/amusing exchange between me, our geneticist's office, and our insurance.
Phone call #1 - from the geneticist:
Them: Just spoke to your insurance, and they won't cover the diagnostic blood test X because they don't cover any genetic testing.
Phone call #2 - to our insurance:
Me: Do you cover diagnostic blood test X?
Them: Yup, it's covered!
Phone call #3 - to geneticist
Me: They say it's covered!
Them: Really? Did you check the specific codes?
Me: No... oops. Will do.
Phone call #4 - to our insurance
Me: Are these codes covered?
Them: Yup! All covered 100%!
Phone call #5 - to the geneticist
Me: They say it's all covered!
Them: Did you specifically say "genetic testing"?
Me: Nope... oops. Will do.
Phone call #6 - to our insurance
Me: Do you cover genetic testing?
Them (now a different person): Nope, all genetic testing is excluded from your policy - none of it is covered. The first person you spoke to didn't know what she was talking about.
So after all that, the end result is that the test (which costs thousands of dollars) is not covered. The insurance gave me the appeal process, which we are now beginning. If it doesn't go through, then we will have to give up the hope of diagnosis and just treat symptoms and then hope for a clinical (i.e. symptom-based) diagnosis from our geneticist at a later date as more of his symptoms emerge with age. Not satisfactory to me - like most Americans, I like pinned-down labels! But we'll see where this whole thing goes... there are a lot of different possibilities out there, and we're just beginning.
My goodness, the medical system is exasperating!