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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Saturday, November 12, 2011

Our Little Shining Star

I haven't posted anything since we were preparing for Piper's last surgery.  I guess I've been busy trying to make everything "normal" again.  She successfully had her port and her hemo-dialysis catheter removed.  Since that day, she has been improving so much!  Her energy is great now.  She plays and climbs on everything.  She has even started eating "a little" better.  She is getting enough food to keep her going, so we're happy with that. 

We even felt comfortable enough to take a short vacation.  On Halloween weekend, we took the girls to Walt Disney World.  They both had an amazing time.  Piper stayed wide awake for most of the day.  The only cat nap was taken during "The Hall of Presidents."  Big sister also chose to take a cat nap during that presentation.  While we were in Florida, Piper decided she wanted to start walking.  She has been walking more and more every day!!!  We are so excited about this.  Her hair is also growing in quickly.  Hopefully, she will be able to wear some hair bows for Christmas!

We had to take the peritoneal dialysis machine, tubing and supplies with us to Florida.  We aren't allowed to take a night off, so we still had to do dialysis at the hotel.  We had to put the machine on a dining chair, the fluid laid to the side on top of a box, and the drain bag sat on the floor.  We had to cut a hole in the mesh siding of the pack 'n play so things would flow easier.  Surprisingly, it worked great!  Praise the Lord!  ... considering how we had things set up, it was nothing short of God's hand that made it all work so well.

Piper is scheduled to have her 3 month OT (off treatment) scans on Tuesday.  She will also meet with her oncology team so they can check her progress.  On Wednesday, she will have her monthly nephrology (kidney doctor) appointment.  These typically last a while because we have to see a lot of people.  Piper handles this well, though.  The following week, she is scheduled to see her ophthalmologist.  We were told that they will be fitting her for glasses at this visit.  They keep saying that, though, so we'll see.

We are getting excited for the holidays.  Piper and Emma put their letters to Santa in the giant red mailbox at Macy's last night.  Piper asked Santa for a new kidney, but she'll settle for some hair bows and toys!  Hopefully she will get her kidney next summer!  We have been told she has to be cancer free for one year, but no one will tell me when that "year" began or will end.....  I was told that they should have better answers for me in January. 

Please pray that Piper's appointments go well this month.  She has been doing so well, and we pray that she keeps improving every day!  Please pray for clear scans, great lab results and a fantastic eye appointment!  Please also continue to pray for the other kids at Duke.  Several of Piper's "friends" are still fighting.  We pray that God will perform miracles on the 5th floor this Christmas!