I just wanted to write a quick post to update you all. Piper is still on continuous hemodialysis and is doing pretty well. She is still a bit puffy and in some pain but her blood work looks good and she’s being well taken care of. We are hoping that she starts eating some food […]

Today is the beginning of a new start for Piper. She had a hemodialysis port surgically implanted into her chest near her left collarbone. Over the next 24-48 hours she will undergo gentle dialysis on a continuous basis. Once the doctors are happy with her adaption to dialysis, she will transition to intermittent dialysis. It’s […]

Piper’s condition has not improved and the doctors have concluded it is time for a dialysis line to be put into place. That will happen sometime today. We are currently waiting to be taken down to the OR. Last night was a rough one. The nurses had to check her blood pressure multiple times and […]

Chris is doing such a good job on telling what is going on that I wanted to mention some great things about this hospital and the care we are receiving. First, everyone has been very nice. From the person who checks you in to the doctor who is doing a procedure of any kind. There […]

I will admit that the emotional swings are getting tough.  We get good news, then bad news, then good news and so on and so forth.  Yesterday was Piper’s CT scan, and although we got the best possible news in that she doesn’t currently have any tumors on her kidneys or lungs, it was a […]

This week is an especially important week which will dictate what our next plans will be.  Tomorrow, August 28th, Piper will have a CT scan with contrast.  She is due at the hospital at 8:30 am for an hour of fluids via IV.  After that, they will administer a sedative and she will undergo the […]

On Monday, August 18, 2014, we took Piper down to see Dr. Jeffrey Dome at Children’s National Medical Center in Washington, D.C.  We left at 7:45 am and got home at 5:00 pm, but it was well worth the trip.  Finally, we left a doctors appointment and didn’t feel the need to immediately go to […]

Thanks for visiting!  I have created this website for a number of reasons: First, I want to track and record the treatment of our daughter Piper’s very rare and scary nephrotic syndrome called Denys-Drash Syndrome.  Nephrotic means kidney, just in case you were wondering. Second, I am very aware that many wonderful people want to know […]