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.
Tuesday, April 24, 2012
Piper has been doing very well lately. Here's what's been going on since Piper turned 2.
First, the hair! Oh, the hair. It is growing! It is growing in thick, and it is beautiful! She insists on wearing a bow every day. She gets a little upset if she doesn't have one. We're still only able to use the "baby bows", but they look pretty!
UNC - We have successfully transferred Piper's nephrology care to UNC. Her new doctor has agreed that Piper only needs to be cancer free for one year prior to transplant surgery. She will be cancer free for one year on August 12th. They have started to run the tests to prepare for surgery. At Piper's appointment recently, she had her routine visit with the Dr., she had a ton of blood drawn for labs and random blood tests that must be run, she had a chest x-ray, and she had an EKG. It was a busy day, but Piper was an angel through it all. She knows the drill. When they tell her to lift her dress so they can see her tummy, she lifts her dress. She typically lays still so they can get the scans without issue. For her x-ray, she had to sit up straight in a chair by herself, and she did it with no problems. I am quite proud of her! The EKG tech said she was his best patient! Her labs came back with one "funny" number, so we're going to go this morning to have one redone.
Dialysis - Dialysis has been going well. We have developed a good routine. It's not ideal, but we have made it work. I am thrilled that Piper will stay in bed for the duration. She has to be on the machine for 11 1/2 hours each night. We put her to bed at 7, and she gets up around 7. (Thank you God for giving us children that don't mind staying in bed for 12 hours!) We are facing a tough decision, though, regarding her bed. Typically, she would have transitioned into a toddler bed by now. We still have her in the crib because we're afraid she'll get out of bed and mess with the machine or try to roam off too far. I don't think she could unscrew the tubing, so she couldn't roam but so far. I'm just a bit nervous about it. I'm also nervous about keeping her in the crib much longer. She's getting big, and I am so afraid she is going to try to climb out. If anyone has any suggestions, ideas, experience... with this, please let me know!
Food - Piper has started to show some interest in a few "real" foods. She has always eaten nothing but Gerber 2nd baby foods. She has been seeing a speech therapist for a few weeks now. We need to teach her to chew and to swallow textures. Sometimes we can get her to put textures in her mouth, but she never swallows. Please pray that Piper will start eating real foods soon. I think she would be much happier if she didn't have to eat purees for every meal.
Me - I submitted my paperwork last week to be a living donor. I am very excited about this opportunity. Please pray that all goes well with the tests, and they will approve me. If we are able to do this, she would not have to wait on a list. We would be able to schedule the surgery, and have it done much quicker!
Piper has also made some big strides lately! She now goes to the church nursery every week during church. She has been doing well with this for over a month now. I am so happy that she feels better about this. It's not an ugly battle. She typically cries for a minute or so, but they say she is okay once I leave. We are blessed with an amazing group of volunteers for childcare at our church. Big sister, Emma, loves everyone so much. She can't wait to go each week! Piper has also developed a love of dresses. She prefers to wear a dress each day now. I picked a dress the other day, and I asked her if she wanted to wear it. She said "no". I asked her to go to her closet and show me what she wanted to wear. She chose her Snow White princess costume! She is definitely becoming a girly girl! ... We settled on a simple flowery dress that would allow her to play easier.
She is also starting to say a lot more. She isn't speaking in sentences yet, but she is repeating a lot of what she hears. Emma teaches her words every day. They will be playing, and I will hear Emma working on a new word with her. "Piper, say "broccoli"", and yes, Piper now says broccoli. Emma is quite a teacher! That's a little scary since Emma is only 3.
I am so grateful to be where we are right now with Piper considering where we've been. She is proving to me every day that God is with her; and with Him, she is bigger and tougher than anything that she has or will face. She is one tough cookie!
Posted by Melissa at 6:43 AM