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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Friday, July 8, 2011

What A Week

I can't believe another Friday has come and gone.  I can't believe that we are still inpatient with no real idea when we will be released.  I really need to focus on the good things right now!  Piper has had a really good week.  Yesterday something clicked in her, and she turned into sweet and funny Piper again.  She has been smiling, laughing, crawling, pulling up, cruising, dancing, waving, clapping, talking and just being plain old silly again!!!  It is very encouraging to see her making so much progress.  Today we visited the playroom here at Duke for the first time.  I was always hesitant to take her because she is so small, but she had a great time.  She really enjoyed watching the other kids playing, and she really liked playing with a fireman's hat!!  She didn't have any tubes today, so she felt free to move about.  Daddy brought her wagon tonight to keep in her room.  We can take wagon rides during the day!  Daddy also brought Mommy something really yummy for dinner (kanki) so I didn't have to eat cafeteria food!!!  Yeah Daddy!!!!!!!

Piper has really gone through a lot this week, but she has done so well with it all.  She is such a strong little girl!  She has had to have her NG tube replaced several times.  She had dialysis 3 times so far this week.  She had a nuclear renal scan and an ultrasound yesterday.  She has had needle changes and lots of dressing changes.  She has had multiple physical, occupational, speech and language therapy sessions, and she rarely gets much rest.  They are trying to plan surgery to place a catheter for peritoneal dialysis.  They need to wait for her blood counts to come back up first.  She has also been struggling with nausea and vomiting.  Please pray that the Lord will comfort her and give her strength and patience as she overcomes all of these challenges.

Our new big challenge is eating.  Piper has been pulling out her NG tube.  She has to do one of the following : 1.  Start eating an adequate amount of food / calories, 2.  stop pulling out her NG tube, or 3.  have a feeding tube placed in her stomach.  These are in order of my preference.  Please pray that she starts eating well!  This is a really big issue that we need to conquer, and soon!!!

Please also pray for me.  Today I have started sneezing and my nose is running.  I really do not need to get sick right now!  Thank you all for your continued love, prayers and support!