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, June 20, 2011

Prayers Are Working

Yesterday we enjoyed some good family time as we celebrated Father's Day!  Brian, Emma, Papa and Nana Bell visited us.  We even had some friends visit us in the evening!  They brought Piper some Mr. Potato Heads to play with.  We are so grateful for our family and friends.  We had some good news yesterday as well.  Piper had 119 mL of pee yesterday!!!!!!!!  That is not even including the poopy diapers!  This is big progress.  We hope to see an increase again today.  I think the Dr.s want to see around 400 mL per day. 

We were moved to a new room at 11pm last night.  It is a corner room, and it is larger!  The dialysis machines are in here right now.  We are able to have the machines hooked up, and we can have all of our things inside the room with the door closed!  This is a much safer environment!  Thank you for the prayers to make this happen!

Piper had a rough night again last night.  She hasn't been sleeping well, and she got sick this morning around 4 am.  We cleaned her up, gave her some Zofran, and she went back to sleep for a while.  She isn't eating well again either.  They have changed her "diet" today to a renal diet.  They are changing the formula for her feeding tube, and they will feed her for 20 hours a day with it.  This is not great news, but it is temporary.

Please pray that Piper's appetite improves drastically!  She has never been a great eater, but I think the Dr.s want to change that!  Please pray that her urine output continues to increase and also for her comfort and rest.  She seems very frustrated and miserable most of the time.  I look forward to seeing her play, laugh, smile and have real fun again soon!