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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Monday, April 11, 2011


We are still here at Duke. Piper had a good day. Her energy was up, but she is still not eating well. She didn't drink much today either. We were told that we can't go home until they see that her counts are definitely recovering. I think they want her ANC to be 500 or more. When we were admitted Saturday night, it was just over 100. Today it was just over 200. They are supposed to draw labs around 3 or 4 am again, so we are praying that we see improvement. We would REALLY like to go home tomorrow!

I have learned some interesting things about "life on the 5th floor" ...  there is a Ronald McDonald House room that offers free snacks and beverages to all parents. You have to sit in their room to enjoy these snacks, though, and they can't allow patients in the room for safety reasons. I have also learned that I am able to take Piper anywhere (within reason) in the building. We just have to sign her out and back in. We also have to pull her IV machine with us. So, today we visited the cafeteria to get me some dinner!  Maybe tomorrow we'll visit Starbucks!  I think it did us both a lot of good to get out of the room for a while!!!

Papa and Nana Bell have been super helpful, and they have been spending some time with big sister, Emma. I am so grateful that we have them in our lives!  We love and appreciate them so much! .... and Daddy and Emma came to the hospital today for a visit!!! As you can see in the pictures, Piper and Emma enjoyed seeing each other. They miss each other a lot!  I can't wait until we are all home and together again!!!