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, September 27, 2012

LIver check-up

Well Coltyn had his liver check-up on Tuesday September 25, 2012 and everything went FANTASTIC!!!!  His labs and ultrasound were good and she was alright with his weight and height.  He is still 19 pounds and 77 cm long.  HE is growing but very slow and he is very little but she said as long as he stays on his own growth curve and doesnt start to fall off she is alright with that.  We did learn that we are giving him to much milk in a days time.  He would notmally drink 35-40 ounces of milk a day, but she said that he should only have 24 ounces in a days time.  So we are to cut back on that to see if he will eat more and gain some weight.  She said he is filling up on empty fats calories and that is probably why he doesnt eat that well for us.  SO we will see if this helps and make sure he is getting protein and things with high carbs in them.  She was happy enough with everything that she doesnt need to see him for 6 MONTHS!!!! YAY GO COLTYN!!! I was happy for him that he is doing so well.  There are so many others that are not as fortunate as we are and have had to do transplant by this age.  I thank god everyday that we are so blessed and have been so lucky.  He sure has been watching over my sweet little boy.  I did ask the doc about tranplant and she said well yeah it can just fail and he would need a tranplant and she siad but most have or need a tranplant by the age of 2 and well Coltyn is not going to be one of those as he is doing so well and she said we arent even considering transplant at this time.  SHe did say we are hoping to make it a few more years without but all we can do is wait and see what happens.  So it sounded as if it will happen sometime in the future just not sure when.  I pray that when it happens I have the strnegth to make it through, but I have my family by my side through it all and they will help us through it when the time comes. All we can do is celebrate and be happy that he is doing as well as he ia and move forward and ENJOY every minute we get with him and him being healthy.  We will try again to go off the septra in November, so we will see how he does this time.  I am hoping that things are better then last, but if not that is alright we can make it thourgh again. So as for now  Coltyn is doing AMAZING and we are enjoying every minute of if!!!! WE even went to Florida this past week!!!!!!!!! Everyone had an awesome time!!!!!! Very much needed time away and time with my parents!!!!
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