Evie was admitted to the hospital on September 27 and diagnosed with probable congenital nephrotic syndrome, meaning her kidneys aren't filtering protein. We don't know how. We don't know why. Neither Erin or I have it in our family histories, and it is possible that this is a unique mutation in her. Our care team is persistent in their search for the particular cause of Evie's nephrotic syndrome. Genetic tests have been sent off to the lab and take about 4-6 weeks for results. In the meantime we are pursuing multiple courses of treatment to "shrink the drain" in hopes that she begins to retain more protein. Like the genetic tests, treatments take weeks to begin showing effectiveness, so it is likely we will be hit with a lot of new information toward the end of October or early November. It is possible (and our prayer) that she has a treatable variant. We just don't know what we're dealing with yet. If not, a kidney transplant may be in our future – but we don't know that for certain yet and remain ever faithful.
While we wait for a clear path forward, we believe God will perform a miracle in Evie's healing. Friends and family, we ask that you pray with us for divine intervention and complete healing. We ask for prayers not to lose urgency in our hope for divine healing during this period of uncertainty. We also ask you to pray for strength and courage as we face this with our little champ. We don't know yet how God will use Evie's journey to His glory, but we know He is putting things in motion for Evie's good and His glory. We know our God holds Evie in His hands; we know God delights in her, as we do.
Thank you all for your continued prayers, offers of help, phone calls, and encouraging text messages. Y'all mean more to us than we can express. God has revealed Himself to us through all of you, and we couldn't be more grateful.
**Quick disclaimer: Should you choose to donate, please be aware all donations go to the caring bridge website overhead and not toward Evie. Donate if you feel compelled, but be aware this does not come to us :)