Dylan W Levy
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Evaluation at Stanford

5/18/2007

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Yesterday was Dylan's eval at Stanford. Overall we are still very confused about what is in store for our little guy. Dylan's labs are still good so if they were to list him him would have a very low PELD, around 10. They say with the new system of listing that there really is no point of listing Dylan until he is ready. However, with Dylan's itching and little to no weight gain that it may be better to transplant sooner than later. They have started Dylan on Neocate formula, which is $55 dollars a can. He will need 3/4 of a can a day. This will try to help him gain more weight and continue to grow. We have started to treat him with Rifampin for elevated bile salts. They will be meeting to discuss Dylan's case today. We should no more later today. We will keep you posted.

-Amber
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Getting ready for eval

5/14/2007

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On Thursday (05-17-07) Dylan goes to Stanford for his Liver Transplant Evaluation. We are hoping to het the answers that we have been searching for since we knew he would need this transplant. Noah and I are all a "little" stressed out. I plan on bringing paper and a pen to right everything down. It will definantly will be an experience. 

-Amber
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Allergist and Dermatologist 

5/7/2007

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Dylan meets with his allergist and dermatoligist today. This poor boy has so much going on. We will be meeting with an oncoligist sometime very soon. Dylan has swollen lymph nodes all over his neck, head and under his jaw. I am extremely scared of what it may be. Cancer is not a road I want to travel. I just keep praying that he will do better and that this is just liver related. 

-Amber
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Transplant Evaluation 

5/2/2007

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Dylan's transplant evaluation is on May 17th. From what I hear it is a long process. I am nervous about what is in store for us. He has had a lot of issues lately. We are not are if they are liver related or not. He had blood work done for allergies and he is allergic to everything. They have put us in touch with an allergist and a nutritionist. Also his esoniphils are making up 50 percent of his WBC count, they are supposed to be only 1-3 percent. He has larges lymph nodes all over his head, neck and under his jaw. His doctor is contacting a oncologist/hemotoligist for possible causes. It is hard for us to put on a happy face, but we do it for Dylan. We'll keep you posted.    

-Amber         
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    The Journal section of the site will be kept up to date with Amber and Noah's thoughts, feelings, and of course hopes...Thanks for taking the time to read and please feel free to comment.

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