The new beginning - Just didn't know what we were getting into.

We got to the hospital early, to make it for the rounds.  That's when we met up with Dr Venkat.  He seem to think that he has CCHS, he said that we will do a genetic testing and that test would also tell us his severity of this.  What is CCHS?  Hmm.... well.... I just didn't know what I was getting into, also, I didn't know that he has to be on a ventilator for life.  Though, we were still focusing on his HD. 

They said that they couldn't do the biopsy till the barium is out.  They did a barium test and it's still in his system, so, until the barium is out, we won't be able to do the biopsy, which means NPO.  Poor baby.... still no food.  He loves to eat.  The last time, he could eat 4oz, and he was then less than 3 weeks old.

We finally got the biopsy done on May 26th but they will not get the results till a few days later.