We visited Piper's ophthalmologist at Duke last week. We had good news! Piper still does not need to have glasses!!! We are very happy about that! Her cataract is not any larger either, so we don't have to discuss surgery yet! Praise God!!!
Things look well right now. We don't have to go back for 4 months!!! Our only problem at this stage is getting Piper to keep her eye patch on every day. We put it on, and she removes it in minutes! Occasionally we can keep one on her for a few hours, but it's tough. She still is advised to wear the eye patch for 2 waking hours per day. We'll do our best!!!
We also met with a genetic counselor at Duke. The ophthalmologist recommended that we discuss genetic testing. Through our discussions, we learned that they can look at the 11th chromosome and see if specific genes exist. Apparently, they can tell if the patient will likely have the Wilms Tumor or not. Also, with the pax6 gene, they can tell if the patient will experience the effects of WAGR syndrome. It would be nice to know if we need to prepare for any of these possible effects/outcomes. This would also tell us if we need to continue the renal ultrasounds every 3 months or not.
(Please Note : I am not a doctor. I am writing this blog as the mother of a patient. I am writing about what I comprehend from the discussions and appointments. I am not always going to be 100% accurate. I wish I was. I do not always understand everything that the Dr.'s are saying, and it is very easy to become confused when you are presented with so much new information. I apologize if any information is inaccurate.)
Piper's next ultrasound is scheduled for March 2. This is also her 1st birthday! We are planning on having the genetic testing (blood drawn) on that same date. We were advised that the full process (all results) could take up to 2 months. The blood is often sent to various labs.
Hopefully, we have good news to report again very soon. Piper will also have her 1 year check up with the pediatrician next week. We are very excited about our little girl turning 1!
She is a very happy little girl! She laughs a lot. She plays a lot! She loves her Daddy and her big sister!!! She learned how to climb the stairs recently, and I think she'll be taking that first step on her own very soon!!!! She's growing so quick!
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.