I have a 4 year old SWCAH son.  He was diagnosed when he was 8 days old.  They put him in the hospital and figured it out.  They do have newbornscreening in Texas, but my son was deathly ill before the test returned.  I was very sad at first, but also so relieved that they figured out what was wrong.  The doctore said he would have died if left at home another day.  The thought of that just scares me and saddens me.  Your little boy will pretty much be like every other kid his age, or mine has so far.  Mine was very skinny and short for a while, but he is currently in a normal range for his age.  At his day-care most kids his age are right around the same size as him.  The blood draws are what depressed me so much; I hated holding him down and letting them stick him over and over.  No one around here could ever get it the first stick, but I learned my lesson.  We started driving the 31/2 hours to Dallas where they have always got it the first time.  We try to make these days fun filled with activities, so he doesn’t hate going so badly.  We are in fact going this Friday for a check up and blood work.  It will get better.  When we first found out we were like there is no way we are doing this agian.  We will not have more children, but that feeling is gone.  We plan on getting pregnant again this summer.  I promise things will get better, and he will be fine. 

Carrie