Well, we've made it home safe and sound...(sorry for the delay in the update).  Trying to get back on track with everything. 

So, this is what we found out:

Ciera -
-has some hearing loss in her right ear.
-some parts of her brain are shaped "different" (not sure if that means anything or that's just the way she made up)

CJ -
- his heart is worse then we thought.  He has an ASD (we were told by ACH it was a hole in the top two chambers - turns out there are 4 holes there)
 - he has an IGA deficiency - (means he is at risk for upper respitory and GI infections)

Both Ciera and CJ -
-The walls of their kidneys have a "thickening" - (may not mean anything or may be a side effect from their meds or syndrome)

- EEG shows so much constant electrical firing going on - (that's why they aren't learning to speak or understand)

-the type of seizures they have may not ever be controlled by medications.

They are focusing on 2 different syndromes -
1. a Lysosomal Disorder - there are 40 types
2. CDG (congenital disorders of glycosylation) - there are 17 types

I personally thing they fit into 2 of the types of CDG.
The CDG results came in, but it's weird - it only showed up in Ciera and only a little bit.  They said that can't be right because they know Ciera and CJ have to have the same thing because they are exactly the same.  Also, if you have CDG, it shows up in a big number, not just a little bit.  So, they are sending me the orders to have the test re-done here and sent to their lab for further testing.

CJ will be having heart surgery next month (around the first weeks of July)  I'll update when I have an exact date.

Well, that's all we know for now....but it's way more then we knew before!  NIH is awesome!

We always that you for your prayers, but do me and everyone else a favor...pray for NIH, the people that work there and the families they see!

God bless!