Hello prayer warriors for Kyle! It’s been a while since our last post, yet a lot has happened... 2014 was a challenging year for all of us. Towards the beginning of the year, Kyle battled chronic infections and airway blockages, which caused him to lose vital oxygen and build up CO2. After a surgical procedure in March to upsize his tracheostomy, his oxygenation was corrected, but we discovered that significantly more damage to his brain had occurred. Kyle lost virtually all mobility by his 8th birthday in April. An MRI indicated that this was due to increased inflammation in the basal ganglia portion of his brain. His muscles transitioned from a state of exacerbated stiffness to a state of perpetual flaccidity. He could no longer blink, smile, swallow, move his arms, fingers, legs, or any other part of his body. Increased damage to his brain stem also resulted in a loss of body temperature regulation, thus beginning a battle against hypothermia. Kyle’s lack of mobility also caused his caloric expenditure to plummet versus what we were feeding him, so he surprisingly gained over 20 pounds in a matter of months. By September, we will admit that we started to fear the worst. As parents, it is so gut wrenching to see your child suffer. But was Kyle suffering or was he comfortable? Was he scared or was he content? Kyle’s inability to show or tell us the answers caused us to question everything. What would be the most humane thing to do? What about his quality of life? Could we ever agree to withdraw care? Could we ever imagine life without him? These impossible questions hung heavy in our hearts. By November, somehow, someway, we felt a renewed ray of living hope shine upon us. Kyle overcame his chronic infections after several courses of antibiotics for staph and pseudomonas as well as an experimental vaccination. We were able to Kyle off of two prescriptions, which helped glimmers of responsiveness break through. In December, Kyle’s lead doctor made a remarkable discovery with respect to Kyle’s genetic condition and potential treatment. A research team in Europe took interest in Kyle’s rare case and agreed to take it on. We started Kyle on high doses of Vitamin B3 (Niacinamide) – shortly after, we noticed Kyle’s blink, gag and swallow reflexes return. His eye, jaw and tongue movements seems to be more purposeful. Now that it is a brand new year, we are filled with incredible optimism for Kyle’s recovery. With positive persistence, we will fight on and find answers, because Kyle fights on and never gives up. For those of you who have continued to pray for Kyle, we thank you from the bottom of our hearts. Your support has carried us through the darkest days and lifted our faces to the sun. Kyle’s precious life continues to touch so many around the world, teaching us the most valuable lessons. Until our next post, God bless, and happy new year!
Posted on: Sun, 04 Jan 2015 19:10:49 +0000
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