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Finding a Medical home – and also the best Quality that Life – for Our small Superhero

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Meet our child Caleb. He’s an active 6-year-old, a first-rate negotiator (!), a great reader and a significant student that all points superhero, particularly Spider-Man. He’s also a child with a life-threatening minister disorder.

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In at an early stage 2016, we were life in one more state and also struggling with complications Caleb had developed at a hospital where his doctors had actually never viewed a son with his rarely condition. Among his former doctors dubbed us and also encouraged us to visit theintestinal rehabilitationteam at Seattle Children’s. As soon as us could, we flew throughout the country.

In Caleb’s six short years, we’ve stayed in three various states trying to find the sort of treatment that will offer him the very best top quality of life. The minute we met the team in ~ Seattle Children’s, us knew we’d uncovered our medical home – and our fourth and also final location of residence.

We were yes, really amazed the the team knew absolutely everything about our son’s condition, and we conveniently realized it’s because they have actually subspecialists who only emphasis is treating kids with bowel duty issues. We were deep comforted to learn that the team is just one of the few in the country with survive rates above 90% for children withintestinal failure.

We moved to Seattle once Caleb was solid enough to it is in airlifted – just a month and a half after our meeting. Finally, our tiny Spider-Man had actually a real web of lifesaving caregivers who had actually his back. We felt like we might breathe again.

“My digestive mechanism doesn’t work, yet I deserve to still play.”

– Caleb, 6

Life through a chronic, significant condition

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Caleb to be born v a problem called MMIH wherein the smooth muscle the lines his urinary tract and also intestine doesn’t contract normally, slowing his bladder and also bowel function. Caleb’s tiny intestine have the right to absorb nutrients, however his large intestine doesn’t work at all. He has a surgical opened on his abdomen wherein an ostomy bag collection waste.

Many children with MMIH don’t survive their very first year that life, however our Caleb is a fighter. Prior to we moved to Seattle, that weathered everything from months-long hospital remains to gift near death on a heart-lung an equipment (and practically having his leg amputated).

As parents of a medically facility child, us hope for the best and prepare because that the worst top top a daily basis. Most worrisome are the episodes wherein Caleb should be hospitalized because his little intestine freezes up and he can no much longer eat through mouth. At these times he goes top top a kind of nutrition that is offered intravenously, so it bypasses his stomach and intestines and also goes straight into his veins.

One the our large fears when he has actually one of this episodes is the he won’t have the ability to go back to eat on his own. Having actually a committed intestinal rehab team – doctors, nurses, nutritionists, social workers, psychologists – who have the expertise to wean him off the intravenous nutrition and assist him get back to eating consistent food is a substantial weight turn off our shoulders. The team really does give us the support and also strength come cope with the unpredictable nature of Caleb’s condition.

And yet… our brave boy reminds us that he is a child very first and a patient 2nd by explaining his problem this way: “My digestive mechanism doesn’t work, but I have the right to still play.”

Focusing on high quality of life

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Nearly 25% of children at Seattle Children’s are just like Caleb: castle have diseases that will an obstacle them – and their whole families – for the rest of your lives. And also their childhoods incorporate frequent visits to the hospital for appointments and inpatient stays. For Caleb, a son who has had such intense clinical interventions at other hospitals, staff members at Seattle Children’s go above and beyond to make his visits – and also the medical care he receives – straightforward for him.

From the janitors to the valet parking team come the folks in the playroom, anyone is at sight friendly and constantly willing to chat. (Did I point out that our son doesn’t know a stranger?) and also it makes us tear up to think around how his entire treatment team rallies approximately his love the superheroes.

His main doctor, a world-famous gastroenterologist, is “Jameson” due to the fact that Caleb thinks he looks choose the personality fromSpider-Man. The orthotics tech who fashioned a leg brace for him is “Tony Stark,” a personality fromIron Man. And also the entire rehabilitation team describes Caleb’s appointments as “superhero training,” a strategy that got rid of his anxiety about doing rehab because that his leg.

I am so thankful for our treatment team and also their focus on help Caleb live his ideal life at every age and developmental stage. Of course, we pray for a miracle every day. However most times, we’re reminded the every job is a miracle through Caleb in our lives. And also we are exceptionally heartened the his doctors say they fully expect that to grow into adulthood and be maybe to have a family members of his own.

Thanks come Seattle Children’s, Caleb is farming normally and also that renders his journey a small less unpredictable. Because that us, we understand his treatment team is with us every action of the means – and that makes our trip a lot less scary.

An upgrade on Caleb

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Caleb is currently a kind, smart, silly and also empathetic 10-year-old that loves to talk and also keeps his family – and also his medical care team – on their toes with his kind questions and commentary ~ above the world roughly him.

Like many children his age, Caleb loves video games. He additionally enjoys reading (especially pick-your-own-adventure books), play basketball and also badminton, speak his bike, the town hall movies and the Marvel lineup on Disney+, and helping his grandma distribution food to civilization who are homeless. He also recently started boxing lessons together his mom.

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Although Caleb continues to have actually ups and downs on his medical journey, this avid superhero fan inspires his parental every day v his fighting spirit.

“I could not execute what the does,” states Constance, Caleb’s mom. “He walk out into the world and is exceptional to watch. Ns tell that that ns don’t worry about him; I just admire him.”