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. 

Friday, January 20, 2012

7 Months post Kasai

So Coltyn is 7 months post kasai!!! WOW my how time flies.  He is still doing really well.  We have noticed that his 2 bottm teeth that have come in went from white to a grayish color.  We talked with GI about this and they told us that it is from his bili levels being so high when he was developing them.  Hopefully his permanent teeth wont be like this.  We are about to end his antibiotic this week so it is kind of nerve racking for me as I dont wat him to get sick with Cholongitis.  If he gets this we will be back in the hospital and we are on a roll right now of 3 months in a row out of the hospital!!! We will see how it goes.  Other then this he is a normal 8 month old.  He is still not crawling but will walk all over the place in his walker.  Over time I am sure this will come. He LOVES his big sister.  She can get him laughing no matter what it is she is doing. I LOVE my kiddos!!!!

Monday, January 9, 2012

Update

So it has been 4 weeks since Coltyn has been t the doc and he did start last week with lighter colored stools for 2 days so we decided to call GI and they said to watch him over the weekend and told me things to watch for: big belly, fever, not eating, and jaundice.  Well none of that happened and as of Sunday he was back to regular color!!!! Very happy about that.  I also took him to get his weight checked as I dont think he is gaining very much, and I was right.  He was only up 8 ounces from his last appointments with GI.  He went from the 6% to the 3%.  The ped said she was not to concerned and that we will just wait it out and see how he does when he comes in for his 9 month checkup in Februray.  He went from 15.11 to 16.3!!! He still has not doubled his birth weight!!! O-well I am ok as long as he is gaining and not losing!!! He is still taking his antibiotic until we are out which will be here in about 1-2 weeks then we will see how things go without it.  So things are going pretty good, just take 1 day at a time.