A Meeting of Friends!

Colton and Deborah

Lucy, one of our Mom moderators, and her husband Matt, brought Colton out to Ohio from North Carolina for some very specialized autonomic testing last week.  It just happened to be at the same Children's hospital that I take Deborah to.  We talked for several weeks about meeting, and then it almost didn't happen between Colton's hospital schedule and Deborah having a mild aspiration pneumonia!  However, we finally did get to meet for a little while in the lobby, and we got some great pictures too!

Lucy, Matt, and Colton

Colton and Deborah Again

Group Photo:
Matt, Colton, Lucy, Deborah, and Patricia

Colton's Story

Colton has been a fighter in every sense of the word since his birth in 2008.  He has led us on a journey, teaching many to think outside the box in terms of medical conditions and abilities.  In the first year of life Colton acquired a custom tracheostomy tube, a ventilator, a feeding tube, glasses, many medications, and many diagnoses. One of the major diagnoses is rare and called "Autonomic Nervous System Disorder" that affects literally almost every system in his body.  Autonomic medicine is all about the central part of the brain that controls our automatic functions that we don't think about.  When this short circuits, the body reacts to things it thinks are happening, but aren't always.  Most of us, if we try to hold our breath, feel when we have to stop and take a breath.  Colton and kids like him don't feel like they are suffocating. They may breathe, but not very deeply.  Or, they don't always feel thirsty even though their bodies are literally dying of dehydration.  It is a rare specialty and even rarer in pediatrics, and there are very few physicians that can even explain the disorder.  The medical community told our family recently, that in this field the science is very young, and science must make advancements before there could be any answers.    

We take each day for the best it can offer, and hope the next will be equally good or better.  We are aware that the instability of the autonomic nervous system within Colton’s body is something we do not understand, nor does the medical community.  We never take the next day for granted.  Everyday Colton greets us with a glowing smile; he does not understand that he is anything other than a two year old little boy who loves everyone he meets.  His body doesn’t agree with the speed that he wants to go, so we have to place restrictions on him so he does not overstress his body.  Colton always feels hungry because of his autonomic dysfunction, to such a degree that a lock is on the refrigerator, along with a restricted diet due to constant weight gain.  

New transportation equipment is being ordered to enable him to have the necessary equipment Colton needs at all times.  We hope to travel to Ohio for testing in the beginning of September for more answers, and are still awaiting final approval from Medicaid that they will cover the out of state funding.  Colton, like so many other chronically ill and medically fragile children, relies on Medicaid to cover most of the expensive medical equipment and medications that would otherwise not be affordable.  Yet there is still so much they do not cover.  Our family, like many others with special needs children, are living on a very restricted budget due to frequent illnesses and medical appointments (that are often a long distance from home.)  Soon we will need a vehicle with modifications to meet Colton's needs.  Despite all of this, we try to keep things as normal as we can for all of our family.  We have nursing assistance for Colton, which helps us tremendously to give Emma (who is 3) the individual time she needs.  We also take some time alone as a couple.  We were an ordinary family, who thought we were going to have a typical baby boy.  Colton is way beyond typical - he is a fighter, a miracle, a brother, and a son who is LOVED!