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.

Thursday, January 26, 2012

Being stubborn

Ok so I took Coltyn to the ped yesterday becuase he has now decided that he is not going to take much formula in a days time.  He should be taking 24-30 ounces a day and he is at 12-15 on a good day.  He started that when i gave him a sip of my milk. OOPS I thought that maybe he had an ear infection and that was why he wouldnt taket eh bottles?! But nope he is good to go just being stubborn.  The ped did tell me to try a sippy cup and see if that helps, she thought maybe he was wanting to be a big boy and not want the bottle anymore.  So we are trying that to see if this helps.  He is eating like a pig with the solid food though.  He is eating at least 2 jars of food and most times at dinner another half a jar if not a whoel one.  The ped did say that was a good thing but we needed to get fluids in him because oherwise he will become dehydrated.  She said even water would be something to prevnt dehydration.  We weighed him and I am happy to say that at 9 motnhs old he has finally DOUBLED his birth weight!!!! Yeah I said it he has DOUBLED his birth weight!!!!!  He is currently 16 pounds and 12 ounces!! HE still isnt gaining very fast but he is gaining so that is all that matter to me!! He did go back up to the 4% for his weight this time.  So we will see how he is doing next week Thursday when he goes to the ped for his 9 month well check.  If he is loosing weight cause of not taking formula then we will have to figure out a new plan.  So for now we are holding on and playing the waiting game until next week unless he gets dehydrated. 

2 comments:

  1. Great news about the weight gain!! SO happy to hear that he's doing so well!!

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  2. Yes he is doing GREAT other them him not wanting to eat. I cant believ it has taken this long for him to double his birth weight but that is ok!!! If he is anything like his daddy he will be skinny!!I hope Elise is doing welL!!!

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