say what?

alpha-1 antitrypsin deficiency.

huh?  excuse me?  say that one more time please.

alpha-1 antitrypsin deficiency.

what the hell is that?

"The alpha-1 antitrypsin (AAT) protein protects the body, especially fragile lung/liver tissues, from the damaging effects of a powerful enzyme called neutrophil elastase that is released from white blood cells. In AAT deficiency, a genetic mutation reduces levels of the protective protein in the bloodstream. AAT deficiency can lead to chronic obstructive pulmonary disease (COPD), specifically emphysema, and liver disease. A small proportion of children born with AAT deficiency are jaundiced in the early days and months of life. Between 15% and 19% of adults with AAT deficiency develop cirrhosis of the liver after age 50."

you have got to be kidding me right?  did you say genetic disorder?  you told me she JUST had a virus.  how can we be talking about metabolic problems?

deep breaths...  Lord, are you there?  what the hell are you trying to do to me?  can you hear me?  i'm so freaking mad you at you right now.  how could you do this to my sweet baby girl?

lots of tears.  lots of reading about this crazy deficiency.  lots of angry talks with God.  lots of tears.  lots of encouraging words and notes from family and friends.  lots of tears.

and now the good news.  

her liver enzyme levels are decreasing.  she seems to be healing.  she won't necessarily have ANY of the scary symptoms that we have had to read/talk about...but she could.  but if she does get liver damage/disease or cirrhosis...i know we have the best doctors who will recommend the correct route.  if that is a liver transplant, praise Jesus we are an hour away from one of the best transplant hospitals in the world.  praise Jesus that our doctors are taking this seriously.

she just happened to contract the CMV virus as well...which showed its ugly face by inflaming her little liver.  and because of the deficiency, it's slower to heal the liver.  so what now?  we will take KG for labwork every two weeks to continue to monitor the enzyme levels.  as long as they keep dropping we are on the right track.  every two-three months we will go see the GI specialist at Children's.  if the enzymes don't improve...we will talk about a liver biopsy to get a better look at the liver tissue to see what's going on.  then we reassess.  

for now, the whites of her eyes are no longer as yellow.  her skin is pinking up.  her spleen has shrunk in size.  and all of her levels have come down some.  just keep on dropping!!!!

so today, our daughter has a protein deficiency.  she does not have a disease.

tomorrow, i'm going to wake up and kiss her sweet, chubby cheeks and thank the Lord for my perfect baby.

the day after that i will probably yell at God a little bit more.

in two weeks, we will get labs and i will want to punch the phlebotomist in the face for sticking that needle into her little arms.

and right now, i'm going to fix my eyes on Jesus and beg Him to continue to heal my daughter from this virus and protect her little body from any further damage or disease.  please continue to be prayer warriors alongside us.