We had a special prayer time tonight as a family with the Senior Pastor and Elders of our church. That was our follow up step in the "praying for a miracle" task that Sara mentioned after her last urology appointment. We pinned a copy of Sara's last x-ray to her midsection so we could have a visual. They prayed for the kidney stones to break up just as they were formed, for her kidneys to return to the function that God intended, and for our process as we pursue further testing. Sara was blessed for her faithfulness and prayed over to carry God's promise for the future. It was a very sweet time. It amazes me how Sara handles it all.
After we left the office and were walking in the hall, Sara said to me "Mama, my friend Avery got baptized a long time ago."
"She did? When?"
"When she was a baby."
I don't know why I was led to pause there but I sat down on the bench in front of the elevator with her and explained that we get baptized when we choose for Jesus to be our forever friend. She said "I want to do that right now."
"You do? You want to say that Jesus is going to be your forever friend right now?"
I went thru some questions with her about what she thought that meant. It was challenging trying to word things in a way I thought she would understand. She has always had a sense of just knowing things and is very insightful. She often comes home from school and tells me "God spoke to me today." I will ask her what He said and it is usually something sweet like God said she was coloring very nice. We prayed for her to know Jesus more and more every day and for God to continue to shape her into the special young woman He planned for her to be.
As a medical update, we spoke with the doctor who performed Sara's surgery in Boston who is now in Arizona, Dr. Nguyen. He agreed to a conference call with us on a Sunday night at 8pm almost 2 weeks ago. He actually had an idea! That is the first time we have heard those words spoken out of a doctor's mouth since we started this whole process over 2 1/2 years ago. Dr. Nguyen had a patient very similar to Sara--all bloodwork and other labs came back normal and nothing seemed out of the ordinary. However, when blood was sent off to Mayo Clinic for genetic sequencing he was found to have a genetic defect in his calcium channel. Essentially his body was not absorbing calcium properly and instead it was sending more than was supposed to be to the kidneys and that was causing kidney stones. Dr. Nguyen thinks the same thing may be going on with Sara.
You can imagine how excited we were to finally have a possibility! I have spent the past 2 weeks going back and forth with the nephrologist because I cannot get him to agree to order the test. He wants us to meet with another doctor first for a second opinion before we would have any testing performed because he sees no indicators that something would be genetically wrong. It seems clear to me that we have been looking for normal things that could be an explanation for long enough. It is time to explore the possibility of something out of the box. I have told the nephrologist twice that we do not want to wait any further and just want the test ordered. Finally today Shannon called Mayo Clinic himself to ask about this test. Apparently it is a simple blood test to order and it can even be ordered by our pediatrician! I emailed the nephrologist today and told them for the third time that we want the test performed and if he was not willing to order it then I would pursue a different channel to get it done. It is becoming very frustrating when we were feeling so hopeful.
If Sara does have a genetic defect with her calcium absorption she would be on another medication that would assist the body with that. The medication would need to be started prior to doing any surgery to remove her current stones. Otherwise the surgery would be ineffective. And it is crucial to finding answers because if she ever reaches the state of needing a kidney transplant and she has this genetic defect, then her body would just make stones in her new organ, as well. In my mind, it is entirely possible that Sara was born with fully functioning kidneys and this genetic defect has just caused deterioration over time. I will never really fully know that answer, though. At this point, all planned medical procedures are on hold.
Even in the midst of all of this, I find myself extremely aware and grateful of all we have gone thru in the past. It has taught me to ask questions, continue to pursue all angles, and passionately fight for the best care for my child. Between losing jobs, going thru infertility, NICU experiences, etc. I have learned how to go thru things that are hard with faith. I think of many other parents that don't have that faith and wonder how they can survive.
Being an advocate for my children is one of the most challenging things I have ever had to do.