In a conversation with an Mary B’s Organic Bakery today I was asked by Mrs Mary what Harper loves. I was stunned that I did not have an immediate answer. I stumbled over my words and came up with some kind of redirection to the conversation but hung up the phone wondering WHAT DOES HARPER LOVE!
One of the symptoms of CDKL5 is hypersensitivity to touch and other sensory issues. Combine that with Harper’s current medication which puts her in a state of solemnness we rarely get dramatic reactions expressing joy. What we have learned to do is pay attention to the small things and have realized that there are things she truly does enjoy despite her body’s inability to express her happiness. So there are in fact many things Harper likes and dislikes!
Harper does not like:
- to brush her teeth
- fix her hair
- lotion her body
- meal time or medication
- and she HATES THE SPIKY BALLS!!!
HARPER LOVES:
- Her Big Sister
- the fish pose in yoga
- to be read to
- Tom and Jerry TV show
- instrumental music
- toys with lights
- looking outside
- the wind in her hair
- BEADS! IT’S ALL ABOUT THE BEADS!!!
