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, December 18, 2012

Last update for 2012

Coltyn has been doing pretty well.  He has had alot of viruses but we are still trucking away. He recently made it up to 21 pounds but is now back down to 20.  I am guessing it is from being sick with the viruses? He has had a few more episodes of vomiting the last few months but nothing major at all.  HE did it 3 tiems in November and not at all here in December, well besides the stomach flu he had.  GI is fine with letting it go for now as long as its not green or bile and its just once a day. Other then that Coltyn is doing really well.  HE is talking up a storm and repeating EVERYTHING you say.  So we have to really watch what we say as he repeats and or says it when he shouldnt. LOL HE did go off his antibiotic November 20, 2012 so we are hoping he doesnt get cholangitis again!!!!! Last time we went off he got cholangitis about 3-4 months of being off of it.  But we will see what happens this time. He is doing well so far so we are hopeful it continues and he can stay off the antibiotics. Coltyn is still very small for his age, but we are ok with that as long as he keeps gaining weight and gorwing we are good to go!!! He may be small but he sure is a tough cookie.  He amazes me each and everyday!! I thank god for him as he has tought me so much.  I still am having a hard time with him turning 2 in April :( Where has the time gone?! I mean really??? He has been through so much in his little life and I am so glad he is doing well and we have been able to cut back on his blood draws and doc visits!!! He will go back March 26,2013!!! Hoping he gains between now and then. Thanks everyone for all your thoughts and prayers!!!! The quote I LIVE by is:

YOU NEVER KNOW HOW STRONG YOU ARE UNTIL BEING STRONG IS YOUR ONLY OPTION!!!!!!