Wyatt's Journey

Wyatt- his name was hand selected because of it's meaning, "little warrior", and he's been fighting his battle since the very, very beginning.

These past 9 years have included many highs and lows.

After many weeks on bed rest and a traumatic entrance into the world, Wyatt was born at 26 weeks gestation. 40 weeks complete a pregnancy... he was born 14 weeks prematurely, weighing only 2lbs. And there his journey began.

He spent many weeks, a few months in the NICU until he was strong and well enough to come home. There were many times that he danced the preemie two-step, taking 2 steps forward only to take 1 step back shortly there after. But he made it, he was doing "well." Little did we know, this chapter in his life was only the beginning of a continuing battle that he would fight.

His infancy was different than most babies. He hurt, his body was overwhelmed and he required a lot of extra care. He was re-admitted to the hospital several times throughout the first year. He had painful bleeding ulcers forming through his GI tract due to what was thought to be an allergy. We, his parents, were taught how to push tubes down his nose and into his stomach to feed him when he was unable to feed himself. He had surgery to have a feeding tube placed into his stomach at 9 months old. His development was delayed dramatically for quite some time until his little body learned how to move his muscles and control his own motion. But once he would figure something out you could almost actually see a little light bulb above his head begin to "glow". It was so special to watch him learn! He began to jump through the various milestones, no matter how scattered they were.

Throughout this time we visited his numerous doctors regularly. At 12 months old an ophthalmology appointment created one of many unique experiences we've had with our boy. Wyatt has bilateral subluxated lenses...the natural lenses in his eyes have detached from their position and were shifting inside his eye, causing his vision to be disturbed. It's rare and even more so in a child as young as he was. He received glasses and a referral to another doctor for further testing. Nothing was found with the testing and we were then lead to believe that this rare eye phenomenon "is what it is" and nothing more. After additional procedures and surgeries on these sparkling blue eyes of his, he's now considered visually impaired and has an Intra ocular lens, much like a permanent contact lens, implanted in his left eye. The right eye has learned to compensate very well and it's lens has stabilized, thankfully.

18/19 months of age seemed to be a month of great achievement for Wyatt. He began taking his first steps and he was also able to have the feeding tube removed from his bulging baby belly. He made a huge leap from his infancy and was using each and every muscle to the best of his ability.

As Wyatt grew older, month by month, he continued to make slow developmental progress across the board. One by one we happily checked off milestones on the list. Though, in amongst the progress we also noticed differences and continuing medical concerns. Differences that were once very quickly blamed on his prematurity and rough beginning, but could no longer be attributed to.

As the list of medical concerns grew, each separate issue was looked at individually and very rarely as a whole. He began to accumulate a long list of diagnoses. Then there were the few things the doctors were unsure how to treat and our concerns brushed aside repeatedly, particularly his episodes of pain in his lower feet and legs. We were very frustrated that the doctors were unable to help our little boy. He would cry, scream and refuse to walk at times due to the discomfort.

As time passed and more medical interventions were needed we pressed the doctors for more information. His pain was progressing to other areas of his body, more complicated medical issues were being noted and we knew something was happening inside our young boy's body. There was something to explain it all.

There were several mis-diagnoses along the way. For several years it had been noted that he had a progressive neuro-muscular disease, a particular type being suspected. And eventually he had a muscle and skin biopsy.

Wyatt is now a 9 year old boy who loves amusement parks, video games and silly goofy fun! The "middle man" of two sisters, one younger and one slightly older than he. He's like any other typical 9 year old boy in many ways, though his body is failing because of its lack of energy to properly function, all due to Mitochondrial disease. A progressive, degenerative disease for which there is no cure. This year alone has been physically very difficult for Wyatt and we've had to readjust our new "normal" many times. He's been through more than most will go through in a lifetime. But, amazingly, he's able to smile through his pain and look forward to each day in a way that is truly inspiring.

This is our boy, my hero.

October/November 2011- Wyatt's Make-a-Wish trip, to travel across the United States in an RV to see Mount Rushmore and Old Faithful at Yellowstone National Park. A very special, memorable trip...

July 2012- Wyatt celebrated his 10th birthday!

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