Lord Above, I need a Miracle... (quoted from Third Day's song Miracle)
Everyday I anxiously await my next chance to sit at my computer and write about the "next" topic for the 30 Day Blogging challenge from WEGO Health in celebration of National Health Blog Post Month. Today's assignment is to write about alternative medicines for the health condition with which we live. Now THAT is an interesting topic to explore...
The first pressing health concern we had with Evie was when she was just a newborn. She had colic. It may not have been a life-threatening illness for her, and colic certainly does not only strike those with WAGR; but it was sanity-threatening for me. At the height of her colic cycle, Evie would start crying at 10 am, and wouldn't "turn off" until between 8 pm and 10 pm that night. Yes, a solid scream-fest for about 10 to 12 hours a day. We made a couple of trips to the ER because the doctors weren't necessarily comfortable just diagnosing "colic" for a baby who had a strange condition like WAGR. They didn't want to just stamp her forehead with "cranky baby," and for that we are thankful.
I had visited my midwife for my six week check up and she asked how things were going. I talked about the colic and how horrible it was and how crazy and isolated it made me during the day. She suggested taking Evie to see a chiropractor. We quickly scheduled an appointment with our local chiropractor and after her first adjustment Evie fell sound asleep for 4 hours...yes...sleeping in the middle of the day...I hadn't seen her do that in weeks!!! We took her back for quite a few adjustments over the course of the next year, and thoroughly believe it was a great therapy for her and helped her avoid many ear infections and colds that may have otherwise occurred.
Aside from Evie's colic, the rest of the next few "ailments" are not things that are common to most infants and toddlers...unless, of course they have WAGR/11p Deletion Syndrome. At three months old, we learned that Evie had a pretty raging case of glaucoma as well as cataracts. She has an eye condition called aniridia, and that means there's no iris in the eye. The eye basically stopped developing at some point which means all the systems of the eye are under developed. She had several surgeries and countless exams under anesthesia in her first year of life to try to get the glaucoma (eye pressure) under control. We had eye drops, of course, but the pressure needed to be decreased to help her be comfortable and to keep the optic nerve and lens of the eye healthy.
The other diagnosis with which we were faced early on was Wilms Tumor. Evie, having WAGR, had a 50-60% chance of developing Wilms Tumor (solid tumors in the kidneys). We found the first signs of tumors when she was 15 months old. She had been getting ultra sounds since 6 months of age in order to watch for the tumor development.
Now, when one has a genetic deletion, as Evie does, involving the 11th Chromosome, then there are several genes that could be deleted; they include, but are not limited to the PAX6 gene and the WT1 gene. These genes affect eye and kidney development. Thus, it's obvious why Evie suffered from the symptoms that she did. Because this is a genetic deletion, because her DNA structure is what makes her susceptible...I find it very unlikely that many "homeopathic" remedies could prevent or cure these conditions. Therefore, we don't make her eat broccoli to prevent a recurrence of cancer, we don't avoid the sun (but we are smart about sunscreen), we don't get all militant about vitamin supplements or anything like that. Evie underwent a partial removal of her kidney and 18 weeks of chemotherapy in 2005-2006. She is legally blind as a result of her eye condition. We battle her high blood pressure, which was a result of the Wilms Tumor and subsequent treatments, with a low sodium diet, weight-control, and medications.
We've done physical therapy, speech therapy, and occupational therapy as ways to counteract many of the neuropathy that results from the chemotherapy. They have all helped tremendously. "Brushing" therapy, Modulated Music therapy, and Joint Compressions have proven to be some of the most rewarding for Evie in helping her learn to control her anxiety and adjust to her sensory needs.
What has proven to be THE most effective, broad-spectrum, alternative medicine for Evie, myself, and my husband has been prayer. We don't deny Evie any medical treatment that is required, don't get me wrong here. However, we supplement the modern day medicine with a hearty helping of prayer and petition to God. He has instructed us not to worry about anything, but instead to pray about everything. God is Evie's greatest physician, and our greatest advocate. God has answered numerous prayers that we have lifted up to Him. He once answered my prayer so immediately as I was prayer journaling when Evie was taken back for surgery for her glaucoma; that as I was writing, the doctor returned to our room and said, "Well, no surgery today. We got her sedated, I took her pressures and they were fine." Did she need surgery later on down the road? Yes. But she didn't need it that day. God gave us a break that day; a rest from our stresses. God gave us a miracle when we needed it the most.
God answered my prayer on the way home from the one of Evie's unplanned trips to the hematology/oncology floor of the clinic in Madison. Evie had spiked a fever and she and I went in so she could get IV antibiotics; it turned out she had pneumonia. I was crying out to Him on our way home in the car; asking Him where He was in the midst of all of this. I said, "I know you're here. Show me!" When I got home with Evie, I laid her down and checked the mailbox. In it was a card from a family member (who wishes to still remain anonymous), and a check for $1,000. I just sat down and bawled my eyes out. Yes, God still does miracles, God still answers prayers. Some people would explain those things away..."You received good things because of your attitude." "You receive good things because you do good things." "It's the energy around you that makes people want to do nice things for you."
While we sit in this world, trying to make sense of all the pain and suffering, why, oh why, do we deny God's miracles when they happen right in front of us? We ask, "Where is God?" and yet He shows himself to us everyday!
Evie has a story to tell. God shows His power and might in her, and through her, by taking her weakness and making her strong. I cannot deny His presence in our lives. I will not turn my back on the greatest medicine available to all of us. It doesn't come in a bottle, and it requires no prescription. National Healthcare is not necessary for all of us to have access to this miracle drug. The Creator of the Universe loves us so much that He has promised this medication; with the ultimate healing power, to all of us if only we ask for it. The main ingredients of this medication are love, mercy, and forgiveness. Finally, the cost of the medication is 3 nails, one cross, and King with a blood-stained crown of thorns.