ImproveCareNow Parents


To Scarlet

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This summer marks the six-year anniversary of the beginning of my role as a caregiver for a child with a chronic illness. At times, my daughter’s diagnosis seems so close – and yet so far away. In those six years, she has blossomed from a child into a beautiful young woman. Today she can speak with authority about her care, her medications and her routines. Six years ago, she couldn’t pronounce her medications - let alone tell you the dosing.


Project WOW 2.0

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It is difficult to understand what it’s like to live with an ostomy, or counsel someone on what to expect, if you’ve never had one yourself. With this challenge in mind my son Tyler and I created Project WOW (Wear an Ostomy for the Weekend) and offered it to attendees at the Fall 2015 ImproveCareNow Community Conference, with the goal of helping people gain some perspective by “walking in patients’ shoes” for the weekend. Recently, at the Spring 2017 Community Conference, we offered Project WOW again, with a few new twists.


29 reasons I may be unintentionally ignoring you

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I’m Wendy and in addition to being a baby/child sleep coach (I love helping families sleep), I care for my 5 year old daughter who was diagnosed with Crohn’s disease in September 2016. As we have been adjusting to life with IBD I’ve been journaling how I am spending my time. When our pediatric GI introduced us to ImproveCareNow I wanted to share my story to support others who may be going through a difficult time and to hopefully explain why I may be unintentionally ignoring friends and family.

Here are 29 ways I have been spending my time:


What's the buzz on Buzzy?

Liz is a mom of three whose youngest son was diagnosed with ulcerative colitis (UC) at age five. To manage his UC he takes Humira injections, which are known to be painful. Liz remembers vividly how stressful and difficult it was to get past the pain and anxiety on injection day. The process of negotiating would take nearly an hour, and when the shot was finally given everyone was totally drained. Not willing to accept that this was just the way it had to be, Liz started researching and discovered Buzzy - a device that distracts from injection pain by confusing nerves with both temperature and vibration.

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Dear Parent Partners...

If you are like me, there are times you are on pins and needles with your child that has Crohn’s or Ulcerative Colitis; wondering if they will continue to do well or if the next cold that requires antibiotics or a bout with the flu may take you back to square one in your attempts to get IBD under control. It is the unknowns that scare me about dealing with this disease...

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Keri's Story

Two years ago, in the summer of 2014, my once vibrant active little boy, Parker was very ill. Losing weight before our eyes. Every day, he was getting worse and we were in and out of the pediatrician's office and emergency room, until finally, the on call pediatrician suspected that he had Crohn's. He sent us to the Children's Hospital where we were introduced to the Pediatric GI and Surgery team at The University of Vermont. Two days later Parker had an Endoscopy and Colonoscopy, and we were given the diagnosis. 

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Deb's Story

I was diagnosed with Crohn’s in 1984. Very little was known about IBD. Hospitals were isolated...no one shared information. Now over 30 years later....I never thought I would be a part of a collaborative network that's main goal is to share information and data. When our son was diagnosed with Crohn's disease....I felt like it was time to step up and have a voice.

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Guitar Chant

Most people have a connection with music. Music can calm us:  think about the lullabies we sing to our children. It can excite us: think of the huge crowds that jump and cheer at concerts. And most certainly music can cause us to be nostalgic: think about how often we hear a song and think, "wow that brings back memories!" For those who play and create music it can be an emotional outlet. Music connects.

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Music has always been an integral part of our family. Olivia plays the flute, sings and tap dances. Dominic plays the bass guitar and sings. And Jerome has made a living at being a musician, both as director of Liturgical music at Saint Michael's College and with various Jazz ensembles in the Burlington, Vermont area.  My name is Claire and even though I don't play a musical instrument, I've dabbled in singing in our church choir and love to listen to live music, especially if the musicians are my husband or kids!  

To many, a connection between Crohn’s disease (IBD), ImproveCareNow and music may seem unusual. To us it’s natural. We would like to share with you the story of how IBD has impacted our family and how it lead us to become passionately involved with ImproveCareNow. And, of course, how music is an integral part of our journey.


And the Crowd Goes Wild

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Whether it’s a concert solo, home run, parade, or when a family member gets out of the hospital after a long stay, there’s no feeling like when the crowd goes wild with support and encouragement. In these moments, the town you live in begins to feel like a community.


Building its success together.

Just after the ImproveCareNow Spring Community Conference last month, I wrote about the anxiety and anticipation that can precede such events. As I explained, “what we really want is to have set a scene that will allow all to feel welcome, included, part of the community, free to share their ideas and expertise regardless of role, and that they will leave having felt both delight and full of the “human affections” that are (or should be) the hallmark of a truly collaborative improvement community.”

After the conference, we asked members of the community—from diverse roles and centers—to share their perspectives on how we did. We hope you’ll enjoy their words. I know we all feel the challenge to maintain our momentum and indeed do even better next time and hope you will join us in finding ways to make our next community gathering equally inclusive and participatory – the very best it can be!


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