About Me
- Coltyn
- 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.
Friday, May 4, 2012
1 Year Well Check
So yesterday Coltyn had his 1 year well check. Coltyn only grew 1/4 of an inch in 3 months time!!! He is now 28 3/4 inches tall and well his weight wasnt that great either, he was 17.5 at his last check and is now 17.15 so he only gained 10 ounces in 3 months!!!! The ped is not to concerned since he is still gorwing and staying on his normal curve, but we will have to see what GI thinks in June. I am hoping that the tubes will be our magic fix and that will make him gain weight and he will start gorwing. My fear is that once GI sees he isnt growing much anymroe we may have issues, but only time will tell. The liver is the main concern with all of this as it absorbs everything that your body needs and if his isnt doing that then we may have a problem?! Other then this the appointment went well. He is slowly doing the milestones!! LOL He does them on his own time and at his own pace!! HE just started to army crawl about 1 month ago and then the last week he just figured out how to go to sitting from laying on teh floor without help. He still isnt pulling up to much but he will cruise a little around things when we stand him at an object and he will walk holding our fingers but not behind a toy!! LOL He will get there eventually one day!! I have calmed down about what he SHOULD be doing at his age and just keep telling myself he will do it just give him time and he will figure it out. He has been through alot in his 12 months of life. So we are stiing back and letting him go at his own pace and I am not going to worry anymore about it. So all in all he is doing GREAT and there are no concerns other then i am concerned about the weight and height issue, but only time will tell us what we need to be doing. Thanks for the prayers and support!!!
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