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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Thursday, October 3, 2013

We Have A Date!

Piper wearing her Poppa's hat.  She loves to wear Poppa's hats!

It's been a long time since we've had anything exciting to share.  The last 2+ years have been a very long road, but we are hoping for a break very soon!  Piper's transplant surgery has been approved and put on the calendar for October 28th!  I have been approved again to be her donor.  We are so excited, anxious, scared, hopeful, and most of all grateful!

We have a lot of family and friends who want to help, but unfortunately we'll be in a time of "isolation" before and following the surgery (for about 3 months).  Piper will have virtually no immune system, and we'll be entering "flu season".  She will not be able to go anywhere except her doctor appointments for a while, and she'll even have to wear a face mask when she goes there.  We will also not be able to be on the go very much because we don't want to bring home any cold or flu bugs.  We will only be able to have "primary caregivers" present in the hospital and at home following surgery.  Any unnecessary houseguests are a big no-no.  This will probably make for a strange Thanksgiving and Christmas.   We won't be out shopping anywhere, and we won't be attending any get togethers.

I know a lot of people would like to help by preparing a meal or running an errand for our family.  We will not turn away a meal that a caring friend has prepared for us, but we can't invite anyone in to visit (at least not for a while).  This will be a bit awkward, but it's what we have been advised to do.

Piper is expected to be in the hospital for 4-5 days, and I am only expected to be in the hospital for about 2 days.  We each have a designated caregiver (thanks to my sister)!  We also have someone designated to help with Piper's big sister during this time.  God has provided all of the resources that we need to get through this, and we are so grateful!

We ask for prayer as we are counting down the days until surgery.  We have a lot of preparation to do here at home.  I'll be busy cleaning the house, stocking the freezer and attending all of our final appointments.  My husband will be a bit of a nervous wreck as he will be facing one of the toughest days of his life.  He will have to hand both his wife and his baby girl over to surgeons that day, and then he'll have to sit and wait for hours before knowing we're both okay.

We know that these next few months are really a small amount of time, and we have so much freedom to look forward to starting next year.  We are so grateful to all of our friends and family (near and far) for the continued prayers and support.  We know that God is listening, and He has been very present in our lives.  We pray that Piper's story will strengthen and encourage others.  She is one tough cookie!