Please Note

I am not a medical professional. I do not have any medical training. I am the mother of a little girl who has been diagnosed with Aniridia, Wilms Tumor, and Kidney Failure. I am writing about my experiences. I am not always going to be accurate with details, but I try to be as accurate as possible. Please do not use this information to diagnose or treat yourself or anyone else. Please consult with a trained medical professional for any treatment or diagnosis.

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Thursday, April 11, 2013

Changes ... changes ....

We never met with the surgeon.  (see previous post for details)  My husband and I both came to the conclusion that we no longer felt good about having Piper's transplant done at UNC.  There were just far too many confusing issues with the surgical team.  I am sure they are all wonderful at what they do, but we simply didn't feel comfortable anymore ....   so ......

We are transferring Piper's care back to Duke.  Piper had her final appointment at UNC today.  The nephrology team at UNC was always very good to us, and Piper had a great doctor.  We will miss them, but we feel that we are making the best decision for Piper's long term care.  Piper has her first appointment back at Duke next week.  We have missed the team at Duke while we were away, and we are excited to see each of them again! 

We will decide on which hospital we will use for the transplant facility.  Our insurance will still not pay for her to have transplant at Duke. 

There are a lot of things up in the air right now.  We don't know where, when or any other details of her transplant.  Please pray for our family as we're making new changes.  Thanks!! 

Here is a recent picture of Piper.  She found a cozy spot to sit and read the other day while we were doing school with big sister.  She's a good little girl, and she loves books!!