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.
I have put some pics of both kiddos just cause!!! Hope you all enjoy!!! Ok well Coltyn has officially turned "1"!!! I cant belive he is already 1!!!! IT just seems like yesterday that we brought him home. It sure has been a challenageing year with him, but he is doing so well now. As his Liver Doc says "We will take it when and for how long we can get it"!! I am so tahnkful that he has had teh success that he has from the kasai. I never thought we would be this far out and be doing so well,. He has NO problems from the kasai as of right now. We are still watching his weight gain issues, but we are just taking a backseat and seeing what he is going to do. He is in teh .6 for his weight now, but that is alright we will get there. He had his ear tubes placed on his birthday unfortualtely!!! We said it would be ok as we had his party the day before and we wanted to get it done as soon as we could so we could get off the meds. He had a rough day and night yesterday, but the sitter said he is doing better. I think he is overtired and that he was tired from the anesthetic and didnt want to give in. I aqm hoping these take care of his ear infections!!! If they dont I think I am going to SCREAM!!!! We go on Thursday for his1 year well check so I will post his stats then. I am hoping he is 18 pounds!!!! HE cant get to that point it seems. He has ben at 17.3 for months now!! LOL HE has learned to army crawl and get to the places he wants that way and he is starting to get very very brave and stand without holding your hand. He has also just learned how to sit up from the lying down position all by huimself. I know he is behind, but I am just excited he is getting there FINALLY!!! He is a very vry content baby so I think that is why he is not doing some of teh things he should be. HE will sit and just wantch everything and take it all in. I would like to say thanks to everyone for their prayers and support though this. I am counting my blessings on how well he really is doing!!!! Thanks everyone!!!!!!!!!!!!!
No comments:
Post a Comment