ImproveCareNow Parent_partners


What should I do first?

The first question new parent partners often ask is: What should I do first? One of the first projects I worked on with my team was to create “CHOC’s Guide for your IBD Road to Wellness” – a handbook for newly diagnosed families.


It was a journey of the senses...

My name is Heidi. I’m thrilled to share a bit of our journey…

When my husband & I traveled to India to adopt our kids, 15 plus years ago, it was a journey of senses: taste, smell, touch, sound, and sight. I have learned that parenting a child with a chronic illness is also a journey of the senses. When our 19-year-old son, Stephen, was diagnosed with ulcerative colitis the summer before his junior year of high school, we had no way of knowing where that journey would take us.


Predictions

Remember potty training your precocious toddler?

Remember running to the bathroom to teach your child the proper way to use the potty? Now, imagine potty training your recently diagnosed IBD toddler. Who would have ever predicted that we would be dashing to the bathroom about 20 times in ONE day? This was our introduction to the world of Crohn's!


Helping to make a difference in the IBD community

My name is Erin, and my daughter Caroline was only 9-years-old when she started losing weight, stopped growing and was exhausted all the time. As she grew sicker, she could not keep up with school, play with her friends, or participate in the activities she loves most: soccer and ballet. It took us almost 18 months to arrive at a diagnosis of Crohn’s disease.



A thief in the night

Our IBD journey began over five years ago with our oldest daughter. It presented itself more like a thief in the night rather than a bold, coming out. For three years prior to diagnosis, there was a sense that something was not right, but the clues left were random and independent of each other. Add in a misdiagnosis and it would take someone highly skilled to assemble the clues and uncover the mystery.


A parent partner has incredibly enriched care at my center

Having a parent partner has incredibly enriched the care that our Pediatric Gastroenterology department provides to our patients and their families. It brings a fresh and enthusiastic perspective to our group meetings and has provided valuable feedback for our IBD informational packet that will be given to families.



Illness and inspiration

My name is Steve Woolf and I come from a family of five in Fairfax, Virginia, including a daughter in college and two 17-year-old twins, one of whom is Becky. Becky was diagnosed with Crohn’s disease at age seven, although we believe she was symptomatic before then.


I'm the parent partner

My name is Kathy Rygg, and I’m the parent partner at Children’s Hospital & Medical Center in Omaha in Nebraska. My son, who is now 11, started having symptoms at two but wasn’t diagnosed with ulcerative colitis until age five. 


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