Tethered Cord Surgery Progress

We are thankful for happy healthy children. We have experienced pure joy yielding from promises and blessing assured.

Hayden's spine surgery combined with countless prayers have nearly eliminated two of his diagnosis. 4 weeks post op, Hayden's Urologist said his hydrostenosis of the kidneys is completely gone! We will continue to catheterize every 4 hours to maintain that the neurogenic bladder and kidneys remain healthy. It is a lifestyle change that we are trying to incorporate as our ever-changing definition of "normal".

This week we are excited to meet with his neurosurgeon. As a family along with our nurse, we will be able to bear witness of our noble son's healing and nearly complete elimination of Aerophagia and improved quality of life. With this diagnosis, when no cause could be clearly noted, only symptoms could be treated. The symptoms were awful and escalating for nearly a year. As a process if elimination and months of testing and surgical procedures, it has proven that spinal scar tethering apparently was the neurological cause.

The g-tube feedings are going well. Hayden had sustained the majority of his nutrition from prescribed pediasure formula for years. The past few months with the help of a fantastic nutritionist, we have started a blenderized diet with his vitamix that he is fed through a feeding tube. No more formula. His oral appetite has increased as well and his energy has been restored.

This lengthy trial has polished our character and proven the hardest and greatest learning experience. This journey is a purifying one of devotion that deepens our desire and unyielding determination to learn and grow as much as is within our capacity. It has unveiled our authentic strengths and humbled our will becoming more submissive to better receive charity and service from others (and thank you to all you many "others" out there).

We have been brought low but felt a calm assurance in our prayerful decisions over the many surgeries he has endured. We do not know long term prognosis. We work hard and have faith that the work will do good and be worth while. Each day that he is happy and healthy is a gift that we celebrate. Some days we really hate Spina Bifida and the crisis it causes our family. The good days we used to count by the hour and recently we are counting by the week and soon month....

Be thou humble in thy pleading, and the Lord thy God shall bless thee,
Shall bless thee with a sweet and calm assurance that he cares.
http://www.lds.org/music/library/hymns/be-thou-humble?lang=eng