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.

Wednesday, April 18, 2012

Ears Ears Ears...nothing but trouble!!!!

Well here we are with our 5th ear infection sine February 16!!!  I feel terrible for the little guy!! He has been through so much already why cant he catch a break? We have an appointment with an ENT on April 27, which cant get here soon enough!!! He has been on 5 different antibiotics and they work to clear the infection but it come back within a week of being off them.  I am starting to wonder if this has something to do with him not being on the bactrim?  None of this started until he came off the bactrim, so i was wondering if that had something to do with it? I will be asking the ENT what his thoughts are on teh 27th.  I am so hoping that we see him the the 27th then they say yes lets schedule the surgery and it can be done the followng week so my litlte man can get some relief.  He hasnt had a break his whole first year of life it seems.  Although the kasai is working beautifully right now so I guess that is a break he got.  So we will see what they say on the 27th then go from there.  He is also tongue tied so they will be clipping his tongue at some point.  I am hoping that they can do that when and if they do the tubes.  As of yesterday he has only gained 7 ounces since February 2 so not to much and has dropped to the .5 for his weight?! Not sure why he cant seem to gain but we will be hoping the tubes will be the fix and he will start to chunk up and sprout up!!!   I talked to the ped yesterday about it and she said that she is hoping that he will fatten up and sprout once the tubes are in place.  She siad he is still gaining and growing just evry very slowly so we will see what he does int eh up coming appontments and then go from tehre.  We see GI June 19 so I am going to try to do everything in my power to get him to gain gain gain and grow grow grow!! LOL I am sad to say that he will be a year old in less then 2 weeks :( I cant believe that he will be a year old?! Where had the time gone?! It sure has flown by!!! O-well I guess that is life!! LOL I will update later once we know what is going on with his ears in the upcoming week.
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