I’ll go along with your intuition and/or blind hope — Just even from what I’ve read about and heard from you about Owen, it doesn’t sound to me that a lysosomal storage disorder is in keeping with Owen’s history and characteristics. There’s some overlap, sure, but it seems like you would have known by now if he such a disorder, as a lot of the symptoms are so dire – and has anyone ever told you that he had enlarged internal organs of any kind? That seems like a key base symptom.

That’s my armchair two cents… I hope that the tests do help out in some way – if nothing else, to rule some things out. I’m sorry to hear that he’s in increased pain (and increased spasticity).

On a separate note, I love his frontal bossing in all its glory, as well as that great Uncombable Hair of his! He’s such a beautiful boy.

I suppose I should enter the Present Day, and get some rss stuff together so that I’d know when you update here… but I don’t wanna. Just like I don’t have subscriptions to magazines. But I’ll keep checking back & am thinking of you and yours. -MC