Danita LaShelle Jones, an HAE caregiver advocate, shares how small choices in care can help children with HAE feel more in control. Read her column, “From the Caregiver’s HAErt.”
Transcript
One of the small routines that has made a huge difference in Ladybug’s life is allowing her to take a little bit of control if we happen to either be in the hospital or if we’re at home when it comes to her care.
One of the things she’s really great at is giving herself her own subcutaneous shot when it comes to her preventative medication.
When we’re in the hospital, I let her order her own food and oftentimes dictate how she wants her medicine dosed, especially if she’s having to get something other than the medicine that she’s there for.
It’s little things like that that allow her to feel like she has a little bit more control over a kind of chronic disease that sometimes can make you feel out of control.
