Full story
Hi friends, meet Colton !
Inclusion works to the advantage of everyone. We all have things to learn and we all have something to teach – Helen Henderson Colton was born at 3:08PM on November 30, 2014 after a very hard labor with several health complications. We spent six days in the NICU, due to swelling of the brain and server jaundice levels. When we arrived home with our miracle, we quickly learned something was wrong. Colton was struggling to thrive and was unable to keep down any feeds. Colton was visiting with the pediatrician more often than other children his age. As a new parent, I didn't know what was happening.
March 1st, 2015 changed my life forever. Colton stopped breathing during an aspiration event. Colton was rushed to the nearest hospital via ambulance, where he went without oxygen for over an hour. Nearly 8 hours later, we were MedVac to the closest children’s hospital, where Colton fought for his life in a coma. The prognosis was life shattering... They did not expect Colton to pull through. All I had was hope and prayers from friends and family.
By the miracle of prayer, Colton began to breath over the intubation. After multiple EEGs, spinal testings and blood work, Colton was removed off of life support. He was then moved to the pediatric floor for a few short days and then to a rehab facility, where he spent his days doing physical, occupational and speech therapy. We were learning various activities like sucking and swallowing for feeding and how to roll over! He was placed with an NG tube to assist with nutrition.
Colton was diagnosed with Hypoxic Ischemic Encephalopathy (HIE) and later Cerebral Palsy. Due to the damage to his brain, he suffers from hypertonia and spasticity — which is the tightness in the muscles of the legs, hips and pelvis. I chose to do everything in my power to make sure he was as comfortable as possible. We have done bi-weekly Occupational and Physical therapies, intensive programs including CME and neuro suit, stretching programs, eye patching, some medications, restricted diets, essential oils and supplements, infant massage, AFO bracing, use of a collection of equipment and most importantly... mommies
Intensive Therapy at NAPA in Boston, MA!
creative mind - making just about anything into a therapy activity! ...All while trying to let him enjoy his childhood. My heart wrenches a little every time he struggles to do things that we take for granted. If I could give him my legs, I would. As a parent there is nothing more devastating then watching your child suffer or struggle. Through it all, Colton continues to thrive and learn so much. He is my inspiration to be better and I am so proud of everything he has achieved thus far!
Over the years, I have become a master at researching and advocating what is best for Colton. We are currently looking into adding horse therapy into our routine and are fundraising for the chance of a lifetime - SDR surgery. This surgery would be life changing for Colton. Selective dorsal rhizotomy is a surgical procedure performed on the lower spinal cord. The nerves are separated then identified via an electrical stimulation. Following identification, certain sensory nerve fibers in the spinal cord are cut. This will prevent his muscles from becoming tight, its almost like a new pair of legs! Colton’s spasticity is already high and can become tighter as he grows. Often people experience joints popping out of place due to their spasticity, as well as spasms and severe muscle aches, which are all extremely painful. There are medications, but a lifetime of strong pain meds and muscle relaxers wouldn't be good for him. This surgery is a permanent spasticity reducer! If we can fundraise the amount needed for surgery, we have choosen Dr. Parks at the St. Louis Children's Hospital to perform the surgery!
Please help make this dream a reality for our family by share, prayer and
donations ! All proceeds will be used towards surgery, travel and post care. Unfortunately this surgery is not cheap and there will be a long road of recovery there after. Our current goal is $60,000. I want to thank you all for joining in and supporting us through the ups and downs. I don't know what the future holds, but I know it isn't holding us down!
Want to know more about us and our family? We document a lot of our journey on our
instagram and IGTV account - here you will find all of our daily activities and at home CME exercises.
