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, March 22, 2012

9 Month Liver Check-up

WOW what a 9 months it has been.  We went to the St. Louis Childrens Hospital on Tuesday, March 20, 2012 for some follow up appointments.  prior to my appointments with the specialist we had to have a blood draw and an ultrasound completed.  So we got there about 8:15 am and had the blood drawn then went downstairs to have the ultrasound done.  Man did Coltyn NOT like the ultrasound or blood draw for that matter!!! O-well we got it all done then we went up to the 10th floor to see if there were any nurses that had taken care of him there and we did get to see them.  They said they couldnt believe how healthy he lookd and how big he has gotten.  I was very happy that we got to see them.  Then we decided to go out to the rooftop garden to kill a little more time.  Coltyn LOVED that place when he was in the hospital.  He liked anything but the room.  So when we could get out we did.  Anyways then came the time for his appointments.......... I was so nervous that we were going to get bad news, but Dr. Turmelle was the first one to come in and see him and she said that he looks GREAT and that he was her model patient, she wished all her BA kiddos looked like this.  SHe said by looking at his labs and ultrasound you wouldnt know he had BA.  The kasai is working wonders for him at the moment.  She also said we will take it when we can get it.  I was relieved to hear this but also I know that it can change in no time.  I am hoping that things stay like this but also I realize they more then likely wont.  Then Dr. Dillion came in and said how well he looked.  The only thing that they are a little concerned about is his weight gain, he went from the 5% down to the 1% for this.  Dr. T did say we will see what happens in June when we come back and then go from there.  She said we really couldnt use the last 3 months as a guide cause Coltyn has been sick with 3 ear infections since the end of January.  So we are talking tubes here very very soon I think.  So all in all we had a GREAT check up and I am so happy for that!!! THANK YOU GOD!!!!

I am having a little trouble here lately grasping why GOD has chosen Coltyn to do so well with the kasai and not all the other babies out tehre that are struggling to make it.  I just sit and think then I cry a little cause I just wonder why he chose Coltyn?! I am blessed dont get me wrong but why is he doing so well?! That is the question I often ask myself.  I just feel awful when I see all the posts out there about the kiddos that are being transplanted and think why are we so lucky?! I dont even want to post on the LIVEr group how well Coltyn is doing casue I feel awful!!! O-well I guess this is soemthing that I will have to overcome and learn to deal with.  We go back June 19, 2012  to repeat all the testing to see how he is doing then!!!! Until then we are just going to enjoy the summer and the beautiful weather!!!!
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1 comment:

  1. Shanna MerliMarch 28, 2012 at 9:48 AM

    Yay thats great.. Post the positive it will give the other mamma's hope..

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