Day 9 was a somewhat quiet one.  We made it over for morning rounds, then did our usual.  (I pump a lot, and snuggle from time to time.  J does most of the care and feedings.  I’ll elaborate on our “normal” day another time).

We are scheduled for a care conference tomorrow at 2:00.  I’m making this post a quick one so I can spend more time preparing questions for tomorrow.

My incision follow up is at 10:00 am.  With that in mind, we’re “sleeping in” tomorrow morning.

One piece of information we DID learn is that the blood work for the Amino Acids came back…normal.   That’s a huge one.  There’s a lot that J and I do not understand, and can’t explain intelligently, but our understanding is that the worst case scenario would be if we learned this was metabolic.  Hormones can be replaced.  Muscle tone can be improved upon.  Vision impairments can be accommodated.  But the type of Metabolic disorders that show these brain issues, and have an early onset are very progressive, and impossible to treat.  We are VERY thankful that the Amino test came back ok.  We are still waiting to hear back regarding the long chain fatty acids drawn on their cord blood to help us rule out other metabolic options.  But for now, we’ll celebrate one more partial victory.

J and I went out to dinner tonight with Mipa and Mima to get a change of scenery.  It was a nice mental break, and we got back to the room by 9:00.  In time for a couple of phone calls and hopefully an earlier than usual bed time.

And of course…here are some pictures of our little guys: