When Casey was a baby, still in the first NICU, the hospital brought in a palliative doctor. They explained this as a pediatrician that worked with complex children and made us think he would come in and connect us with other families (something we had been begging for) and give us hope and be this …
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 …
What is a Circle?
Many 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, …
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 …
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 …
Nursing – Increasing Care Needs (Part 4)
Casey, like many kids, has a condition that is considered degenerative (it gets worse over time). This is not always obvious since her personality gets bigger, but her internal systems get weaker and more impaired each year, after reading this laweekly article we decided to start using CBD as a treatment, but the question here …
When All That’s Left Is Love
by Rabbi Allen S. Maller When I die If you need to weep Cry for someone Walking the street beside you. You can love me most by letting Hands touch hands, and Souls touch souls. You can love me most by Sharing your Simchas (goodness) and Multiplying your Mitzvot (acts of kindness). You can love …
You Meant So Much
by: Cassie Mitchell You meant so much to all of us You were special and that’s no lie You brightened up the darkest day And the cloudiest sky Your smile alone warmed hearts Your laugh was like music to hear I would give absolutely anything To have you well and standing near Not a second …
Beyond The Diagnosis
Recently I was honored to be a guest writer for a friend’s blog- Journey with the Johnsons. She asked me to honestly share some of my thoughts, fears, and experiences as a mom with a complex chronic child. I was surprised at how well the article was received and decided to share a copy of …
Nursing – Teamwork (Part 3)
Early on we were able to fill all of our hours with one nurse. However, as we added more shifts (day and night) we also had to add more nurses. Building a team and everyone working together is crucial. We encourage our nurses to not only chart what is required by the agency, but we …