About Me

MY name is Coltyn and I was diagnosed with Biliary Atresia at 2 weeks old. I was born on April, 30, 2011 a happy healthy little boy. Then I went to the peditrition and I was getting more jaundice and not gaining weight so I had to have blood drawn and that is when they discoved my liver counts were all very elevated for a newborn. From this point on I was refered to STL Childrens and saw a Liver Specialist there. I had a liver biopsy done when I was 5 weeks old and then my kasai done when I was 6 weeks old. For those that dont know Biliary Atresia is a rare liver disease where the ducts in the liver dont form all the way and bile backs up in the liver damaging it. This disease effects 1 in 20,000. Then 80% of the kiddos with this wind up with a liver transplant before the age of 5. I am going to be in the 20% that dont need a transplant until adult hood.

Tuesday, October 23, 2012

Update:

Well there really hasnt been to much going on this month.  Coltyn has been doing pretty well.  The BIG news this month is that he FINALLY hit the 20 pound mark!!!! This is a huge accomplishment for a child with Biliary Atresia as your liver does alot of absorbing for you body that allows u to grow and gain weight. He is still very small for is age, but we are still growing, just on our own curve as they call it. We will take that though.  HE has had some more issues with vomiting the past few weeks, but the liver doc said that she doesnt want to do anything since it is just once a day and it is not bile or green and he is not getting dehydrated.  So we are just going to let Coltyn be Coltyn and let him take charge and see what he does.  Otherwise things have been pretty quiet since we got home from Florida and his last Liver appointment. We will stop taking one of his meds here in November.  He is only on 2 meds right now and one is an antibiotic which he is on due from the last hospital stay and having had cholangitis.  So prayers that things go well for us when we go off them and he DOESNT get cholangitis like we did last time.