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, October 28, 2013

Melissa and Piper are doing well and rest comfortably.   Piper has a new kidney and is peeing already.

Praise God!!!!!

Wednesday, October 23, 2013

Getting Closer...

We're getting close to the big day.  Less than a week to go.  We're feeling very positive about things, and we know there are so many friends and family members praying for us.  I still feel like I have a ton to do before the big day.

Our freezer is pretty full at this point.  If nothing else, we will eat!

My sister is scheduled to arrive Saturday.  I'm super excited.  We don't get to see her much because she lives so far away.

Now I just need to make sure no one gets sick before Monday.  Every time someone sneezes, I get nervous.  We all deal with seasonal allergies, so there's always some sneezing going on around here...  I put humidifiers in the girls' rooms, and we rarely leave the house now.  If only they sold giant bubbles on Amazon to wrap the house in until then.  ;-)

We did get a surprising call yesterday.  It was from our pharmacy.  (We really love our pharmacy).  They called to chat with me about Piper's future medications.  They also wanted us to know that they keep a prayer box, and they will be praying for our family as we go through surgery and recovery.  Isn't that awesome?!?  I never imagined receiving such personal and caring service from a pharmacy!  God has really placed us with some amazing people.  Recently our pediatrician wanted to pray with us as well.  It's comforting to know that we're being covered with God's love and provision.

Hopefully my next post will be one of celebration.  Thank you to all of our friends and family for your love and support.

Tuesday, October 8, 2013

3 Weeks To Go...

We have 3 weeks until our surgery date.  We're doing our best to prepare for everything that's going to happen.  I have been told that I will not be my energetic self for a couple of weeks after surgery.  I won't be able to do all of the things that I currently do each day so I'm doing as much as possible in advance.

We're stocking the freezer with lots of home made yummy meals and treats.  We have lasagnas, stuffed shells, burritos, waffles, muffins and a lot more to follow!  I've been spending a lot of time in the kitchen!

We're preparing the house.  Okay, more like I need to prepare the house.  I really need to give the whole house a good cleaning!  I have accomplished cleaning out the pantry.  It's always so pretty when it's clean and organized.  Hopefully it will last a month or two.  At least it is well stocked after my (oh so very expensive) trip to BJ's last week.

We're getting me ready.  I finally ordered a new pair of glasses.  I didn't realize that it had been 4 years since I've had new glasses!  I guess it just hasn't been a priority.  We've been a bit busy with other things.

We have a few more appointments to attend.  Piper has a dentist appointment, her monthly nephrology appointment and finally her pre-op appointment.  After next week we shouldn't have anywhere to go until surgery day!!!

We're preparing our hearts!  We've been doing a lot of praying.  Praying for our situation as well as others.  My uncle has been dealing with a lot of medical issues for the past couple of months and he had a big procedure done yesterday that will have a huge impact on his life.  I've received sad news about more than one child who is fighting or has lost their fight with cancer this past month.  There are a lot of things going on around us that remind us just how much we need God in our lives.  He is the one unshakeable, consistent, always loving source of hope.  It's nice to know that He can't be broken.

We have had a lot of friends that have asked if they could come and visit one time before surgery.  After a lot of prayer, I have decided that we won't be able to invite anyone into our home at this time.  We just received our flu shots last week.  They take a few weeks to work.  The flu and norovirus are spreading throughout Wake county right now, and we just can't risk getting sick.  I hope everyone understands why we have to make these decisions.  They're not easy.  We appreciate the love, support and prayers that are offered by our friends and family.  We look forward to a lot of celebrations, picnics and fun times in the future!!

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!