Normal Days

So I have been giving him all kinds of toys: teddy bears, teethers, colored wooden balls, Ty beanie babies, rattles, and dragons. But he's indifferent to it all! Then I hand him Sailor Moon and he won't let her go! He pulls her hair, twists her and pulls and clutches onto various limbs (or odangos)... 

Unlike his father, he's not embarrassed to like Sailor Moon! Haha! Yay for Moon Prism Power!

He's been starting to hold his head up again. Though he still doesn't actually like it. And when he succeeds it usually only is for a few seconds at a time.

 Now that he's used to his meds and they seem to be working, he's been smiling and cooing a lot more again. Look at those cheeks!

This was right after the first bath ever that he didn't seem horribly upset about. There was no violent escape attempts or tantrums. Just mild fussing when he was getting dressed, which is somewhat normal when dressing without a bath. The world definitely did not end. smile emoticon

Metabolic Geneticist

We've now met a biochemical geneticist with expertise in metabolics. He has informed us that Cyrus is their first patient with this disorder (not surprising), but that we're going to reach out to researchers in Europe who have encountered this before and other experts in this specific nucleotide biosynthesis pathway (because the brain is so complex that we have to specialize that much!). Cyrus is also being put on a patient database so that doctors that are researching this can find us.

And Kyle and I are being referred for genetic testing because apparently there's a very slight chance that we aren't both carriers. There's a possibility that he copied the gene twice from one parent. (I'm not holding my breath).