Casey's Circle

Casey's Circle

Strengthening Circles – Improving Quality of Life

Casey's Circle
  • About
    • Who is Casey Barnes?
    • Why Casey’s Circle?
    • Board of Directors
    • Sponsors
    • Contact
  • Events
    • Tuesday Talks
      • Schedule an Interview
    • UN-Birthday Party
    • Family Jamboree
    • Holiday Party
    • Angel Ornament Dinner
    • Mom’s Club
    • Fundraiser
      • 2019 Fundraiser
      • 2018 Fundraiser
    • Complex Only
    • Register
      • Special Needs Events
      • Bereavement Events
      • Volunteer Subscription
    • Calendar
  • Tools
    • Product Reviews
    • Medical Form Template
    • Home Modifications
    • Activity Guide
    • Quick Tips
    • Custom Creations
    • In Remembrance
    • Resources
  • Blog
  • Donate
  • CaseyBarnes.org
Monthly Archives: April 2016

Fragile or Complex?

When people refer to very medically-involved individuals there are 2 terms that seem to be used often- Medically Complex and Medically Fragile. Neither is really offensive, and there is no right or wrong term. Recently as I was explaining some of the vision behind Casey’s Circle and used the term Medically Complex frequently when referring to the population we serve, I was asked why I say “complex” versus “fragile”?

casey_superheroGood question! Casey was absolutely fragile when it came to her medical condition. Someone could be in the same house (never even coming on contact with Casey) and she could catch the slightest cold or flu that would often lead to much more. However, I never liked to think of her as fragile. She was invincible in so many other ways. She overcame more in her life than most of us will ever face. She was stronger than anyone I have ever known. When it comes to her perseverance and her determination, she was not fragile at all. She was more like a superhero than fragile.

When I think of the term Medically Fragile I think of babies, not Casey. I personally don’t like to use the term Medically Fragile when referring to Casey or other kids like her because I feel like it takes away from how strong she/they really are.

If someone else were to refer to Casey as Medically Fragile, I would not take offense to term, nor would I correct them. I personally chose to use Medically Complex. Casey was complex in many ways, medical is just one. If you prefer to think of your child as Medically Fragile, please don’t see us using the term Medically Complex as offensive. “To-may-to”, “To-mah-to”

April 19, 2016 Leave a comment

What is a Circle?

circle_togetherMany people have heard the terms ‘circle of care’, ‘circle of trust’ or ‘circle of friends’. We purposely did not include an ‘of…’ in Casey’s Circle. When you have a medically complex child, you quickly start to build your circle. It is an all encompassing circle. You may start by adding care team members (doctors, specialists, etc), but your circle will grow to include home health nurses, therapists, teachers, social workers, support organizations, other children like your own, neighbors, family, friends, and the list goes on and on. Each child will have their own circle needs and some circles will grow to be very large. The biggest thing about a circle though is that if any part of it is missing or failing the entire circle feels it. That is why we are all about strengthening circles for medically complex children. By making sure that their circles are solid we can help improve their overall care, their social opportunities, and their quality of life.

April 18, 2016 Leave a comment

Nursing – Finding the RIGHT Nurse (Part 5)

When we first started with nursing I was very unsure of how things work. I would tell the agency we used the hours I wanted filled (within the amount of hours approved by our insurance) and they skills that we needed a nurse to have, but I didn’t feel like I could say much more than that. The agency would send out a nurse and I felt like I had to make him/her work.

If the nurse was not able to handle Casey’s needs, or if they made frequent/careless/serious mistakes then I felt like I could call the agency and ask them to send someone else. If they didn’t actually do anything wrong, but I never felt comfortable with them around or there were issues not related to a specific nursing task I felt like I had to just deal with it.

Communication_effectiveEventually I learned that having an open and honest communication with my agency is crucial in getting the RIGHT nurses. The hours and skills needed is just the beginning. There are certain personalities that my daughter responds very well to, and some that she does not tolerate at all. I had to learn to tell the agency that I need a nurse that is energetic and will play with my daughter, not someone that is going to just sit and chart the entire time. I had to tell them that we could not have smokers at all. We need nurses that will think outside the box and are comfortable doing things a little unconventionally.

If there is a nurse that is very good at his/her job and that Casey seems to like, but maybe their personality and mine don’t click, those I do have to just deal with. The nurses are here to help care for my daughter. They are not here to be my best friends. Those that I may not click with I just approach it as I would a co-worker. We have to work together and we need to be respectful of each other. There are some nurses that I really like a lot, and if things were different I could totally see hanging out together. I am not friends with these nurses either. I enjoy their company while they are here, but to keep things professional and to make sure that nothing jeopardizes Casey’s care, we cannot be friends.

We have had nursing for MANY years now. I joke that I could write a book about all of the crazy as well as the amazing nurses we have encountered. Finding an agency that does a good job of background checks, screening, and calls references is very important. Even when you find an agency that is good about sending you top quality nurses, there will be some that slip through the cracks. You need to be able to honestly talk with your agency about exactly what you need.

One thing that I have learned is to trust my instinct. We have “Meet and Greets” with potential nurses. The agency does their thing and then sends them over to our house for a 30 minute meeting. During this time we talk about the schedule and their experience, and I am very clear on my expectations of them as well. It’s not personal, but some are good fits and some are not. I can usually tell in this meeting if the nurse is going to work out or not. Not all agencies offer this, but it may be something you want to ask your agency about.

StressedOUTThe nurse is there to help. If you are not comfortable with your nurse or if while they are in your home you are more stressed than when they are not, you don’t have the right nurse. Sometimes we have to go through many nurses before finding the right one. Patience and communication are key!

Disclaimer:
I know a few families that have become friends with their nurses, and in some cases no problems at all, in some though the nurses started to take advantage of the friendship and the parents felt trapped. There have been some instances where the parents take advantage of the nurse’s friendship as well and make the nurse start to feel very trapped. A parent may not come home when the nurse’s shift is scheduled to end. Or a nurse may call out, but then the parent sees they were not sick but out at a party all night because they posted pictures on social media. I strongly suggest that while a nurse is caring for your child you maintain a professional relationship.

April 15, 2016 Leave a comment

Birthday in Heaven

Birthdays have always been a huge celebration for Casey. Each year as we would celebrate one more year, it was a huge victory for all of us. We knew from the very beginning that we would eventually run out of earthly birthdays, and that every day (not just birthdays) was a gift. I think knowing this helped us to be that much more thankful and joyous with each celebration.

We got so close to 10, so close! We had already bought Casey an outfit for her party, made arrangements for her cake, started ordering decorations, and we were just working on final details for her Daddy-Daughter Sock Hop. We were all very excited about the big 1-0. Casey’s body had other plans though, so instead, this will be her first birthday in heaven. I’m sure she will celebrate just as big (or bigger) there as she ever did here.

There are family and friends across the globe that follow Casey’s story. We have been so humbled by all of the people that have reached out to tell us how they too were touched by our amazing little girl. I don’t think we will ever really know just how far her spirit spread. Sadly, many of these people were not able to join us for her beautiful memorial service.

We have come up with a way that everyone can participate in helping her celebrate her 10th birthday- or first birthday in heaven. We invite everyone to take photos or videos of themselves (alone or in a group) releasing pink and/or purple balloons. Casey always loved balloons, and all things pink and purple. We plan to have everyone release them together at 12PM CST on her birthday- Saturday, April 23rd.

pinkballoons

After you release the balloons, please post your photos or videos directly on Casey’s Facebook page, our event page, or you may email them to us at info@caseybarnes.org. We will collect all of these photos and videos and compile them into one video, add some of Casey’s favorite music and share the video here.

Please, help us wish our little angle a very special 10th birthday. Thank you, and thank you all for your continued to support.

April 1, 2016

Categories

Archives:

  • March 2020 (1)
  • December 2019 (1)
  • May 2019 (1)
  • December 2018 (2)
  • November 2018 (1)
  • October 2018 (1)
  • August 2018 (1)
  • May 2018 (1)
  • February 2018 (1)
  • December 2017 (2)
  • August 2017 (1)
  • April 2017 (2)
  • March 2017 (3)
  • February 2017 (3)
  • January 2017 (4)
  • December 2016 (1)
  • November 2016 (2)
  • September 2016 (5)
  • August 2016 (5)
  • July 2016 (3)
  • June 2016 (1)
  • May 2016 (1)
  • April 2016 (5)
  • March 2016 (5)
  • February 2016 (3)
  • January 2016 (2)
  • December 2015 (6)
  • November 2015 (3)
  • October 2015 (1)
  • September 2015 (2)
  • July 2015 (1)
  • May 2015 (1)
  • March 2015 (1)
  • December 2014 (1)
  • March 2014 (1)
  • December 2013 (2)
  • October 2013 (2)
  • June 2013 (1)
  • April 2013 (1)
  • March 2013 (2)
  • January 2013 (1)
  • December 2012 (1)
  • September 2012 (1)
  • August 2012 (1)
  • July 2012 (3)
  • May 2012 (1)
  • January 2012 (1)
  • December 2011 (2)
  • Facebook
  • Twitter
  • Instagram
  • YouTube
  • Pinterest
  • Amazon
  • Email
  • RSS Feed
Casey's Circle 2022