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, August 13, 2013

Where Has Summer Gone????

WOW it is already mid August and guess what???????? Coltyn has not had a hospital stay at all this summer.  Actually he hasn't been in hospital since March!!!! This is his first summer since he was born where he was not in the hospital at all. AMAZING feeling to see him enjoy his summer and time outside.  He truly is an amazing little guy.  We have had a fun but busy summer.  He is still small for his age but is growing slowly but surly!!!  He has been on his antibiotic since January and has not had liver issues much since.  He goes back to the GI and Surgeon October 8th.  This is his FIRST 6 month gap as well in between appointments.  We are hoping for good results in October and NO change in anything.  I do have a feeling that Gi will try taking him off of his antibiotic in October but we shall see.  We did have to do labs not to long ago as Coltyn was going through his random vomiting spell and did it for a week straight.  Labs were good to go other then he was a little dehydrated but we just pushed fluids so we could stay home without IV.  Other then that we have had a quiet summer!!!! Thanks goodness he deserves it!!! Also I wanted to let everyone know that we are doing an event called Coltyn's Pajama Party...... we are collecting new pajamas(must have tags on them) to donate back to St. Louis Children's Hospital.  WE will be collecting them now until the end of Ocotber.  We want to donate them at the beginning of November before the holidays.  If you are interested in donating some please let me know.  Thanks for keeping up on Coltyn!!!!
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