Beads Of Courage...

The University of Chicago Comer Children's Hospital is part of a wonderful program called The Beads of Courage. In the past only the hematology children had been part of this program. Recently one of our own very special Child Life Specialist (CLS) pioneered the neuroscience program with the Beads of Courage. We are the first neuroscience program to be part of the Beads of Courage.

For the kids it is a way to tell their story. This is what I have gone through. This is what I have had done. In December Lindsay started her strand of Beads. Since the program started in November/December anything that happened in the past you get 1 bead to show for it. So if you had 7 surgeries, you get 1 surgery bead. (Otherwise the supply would be depleated)

Each bead has a meaning...

These beads are for procedures/experiences before the program started

Left to Right:
Tortoise-Lumbar Puncture, Blue-Clinic Visit, Black-Pokes (IV in this instance), Light Green-Scans (MRI in this instance), Dark Green- NPO (Nothing by mouth)

These beads are from her Lumbar Drain Trial

Left to Right:
Beige-EVD Placement (Drain placement), Star-Surgery (Drain placement) COURAGE Charm-you get for your 1st surgery, Yellow- Overnight stays, Dark Green-NPO, Brown-Lying Flat, Black-Pokes, The bluish one I believe is for her drain removal, Light green-MRI


Her Courage Charm

Our most recent visit.

Dark Green-NPO, Star-Surgery (yes she still got one because she made it to the OR), Bee-Her Extradordinary Occurance Bead- (anaphylatic shock to general anesthesia), Black beads-Pokes (I accidentally shorted her 4 beads. She counted her "pokes" after we got home and she was poked 7 times), Agua- Tube placement (Catheter), Square Heart-PICU, Yellow-Overnight.

Her Special Bead

I am not sure that everyone will appreciate the humor, however when Anne from Child Life said a Bee Bead for her anaphylactic reaction we all laughed. It was only fitting.

Her Current Count on Beads. I have shorted her a total of 5 beads (4-pokes, 1-morphine)

35 Beads, not including the 5 I accidentally shorted her.

She is very proud of her beads. They tell a story. It is something she can share and it makes the pokes, scans, starving, pain all worth it.

Over the next few days maybe weeks I will be posting the hospital stay. I ask now that you just bear with me. There is a lot going on in my head and if it is just too much to read please just don't read it. I need a place to put my feelings because I cannot talk about it much when the kids are up. Please bear with me. It is not a pity party that I will be having, but more of a 1 sided therapy session with my blog.

Much love to all of those who prayed for us. It was due to prayer and God's Amazing work through the Doctors that instead of what could have been a very negative outcome, we had a positive outcome.

Love to all...