Opsoclonus Myoclonus Syndrome

Let Us Marinate

Let Us Marinate

Let Us Marinate


Let Us Marinate on the picture.  Open it up, enlarge it and just look.  This canvas is a 16×20 and there is NO room left to put ANY type of bead.  Beads of Courage is defined as “Every time a bead is given, courage is honored, suffering is alleviated, resilience is strengthened, and the experience of human caring is affirmed. Every Beads of Courage Program integrates the use of beads, the earliest art form known to humans, as visible, tangible symbols of human experiences that need and deserve to be expressed.”

This is my youngest son’s canvas of all of his beads.  We kept them, for the longest time, on strings.  The strings didn’t hold up, so we were able to get 2 beautifully hand-crafted wooden boxes, that were overflowing.  So, one day, I thought…let’s see what I can come up with.  What I didn’t pay attention to was the WEIGHT of this thing.  There is no way a nail can hold this thing up.  We may have to prop it up or use 2 nails and a wire…it is heavy!

Each Bead

You will notice that there are different types of beads. Each bead is indicative of a procedure/therapy/accomplishment/etc that the child has done.  I will say, H did not earn any beads for the first 3 years of his disease.  This was because BOC was a program for terminally ill children or children with cancer.  I believe there was also, at his hospital, a cardiac program.  When we moved hospitals, the requirements changed.  Now, BOC includes those children/young adults with life-altering conditions.  So, these are the beads he has earned in the last 2 years.  Can you even imagine if we were to go back and get them for the first 3 years??!!

Oval Type Beads

Orange (too many to count)

Central Line (PICC), Broviac, Port, Midline, IJ, Pheresis Catheter Placement & Removal

Blue (too many to count)

Clinic Visit

Dark Green (0)

Dialysis, TPN, NPO

Gray (too many to count)

Dressing Change, Central Line, Osotomy, Trach, Surgery Site, Others, & Skin Care

Glow in the Dark (2)


Magenta (too many to count)

Emergency, Unusual Occurrence, Seizure, Emergency Transportation

Light Blue (too many to count)

Eye Exam, Eye Drops, mouth Care related to Treatment

Glass Star (20)

General Surgery

Brown and Face Bead (2)

Hair Loss, Hair Growth

Lime (several)

Isolation Precautions, Fever, Neutropenia

Purple (too many to count)

IV Infusions (One bead per day or initiation & Discontinuation)

White (too many to count)

Learning New Medications, Parent Education

Beige (too many to count)

Nutrition & Diet Transitions

Yellow (too many to count)

Overnight Stay in Hospital (one bead per day)

Black (too many to count)

Pokes, IV starts, blood draws, subq & IM injections, port access, suture placement

Tortoise (too many to count)

Procedures, Cath lab, biopsy, LP, casting, scope, shunt tap, IR, wound care, EVD, joint injectins, aspirations, other

Pink (too many to count)

Respiratory support, sedation, anesthesia, ventilator

Silver Star (14)

Suture Removal, Staple Removal

Light Green (too many to count)

Test, Scans, CT, MRI, X-Ray, EKG, EEG, PFT, PET, US, BE, UGI, Nucl. Meds, Others

Rainbow (250)

Therapy, support staff visit (PT, OT, SLP), Others

Red (5)

Transfusions, Blood products, Pheresis

Aqua (a bunch)

Tube, Catheter Placement & Removal, NG, NJ, G-tube, Chest Tube, Foley, Drain, Others

Papa Beads (too many to count)

He got this from his Papa’s private collection.  These beads are SO precious to me.

Special Beads

Handmade Glass Selection (68)

Acts of Courage, Treatment related Milestones

Square Heart (3)

Admission or Transfer to Intensive Care Unit

BOC Signature Heart (2)

Completion of Treatment, Transfer to Adult Services

Ceramic Special Selection (50)

Independent self or parent giving infusions or injections, Following medication schedule, Special accomplishment, Recognition of Personal or Family Accomplishment

Bumpy (52)

Medication Challenges, Taking, learning, self or parent giving infusion or injection, Mobility Challenges, lying flat, bed rest, crutches, splint, wheelchair, 1st walk after surgery, other

Fish (60)

Transfer units or facilities, long distance travel for care, “upstream battle”

Transplant Glass Selection (24)


Member’s Choice (15)

Discharge from hospital

Let it ALL Sink In

This child, who got sick on June 6, 2017 had WAY more procedures, pokes, traveling, transplants, and all then he has had in the last 2 years.  This canvas is only the last 2 years of the 5 he since he has gotten sick.


He is amazing, brilliant, strong, capable, able, and now he is HEALED.  I never thought I would say that word in relation to H, but here we are saying it loud and proud for all to hear.  God is good.  I didn’t think He was good.  Honestly, I wondered if He even existed sometimes.  Yet, I had warriors, all around us that held up my arms and faithfully prayed for my son.  They were my faith when I had none.

My Theme Verse

Romans 4:18-21 Against all hope, Abraham in hope believed….Yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, 21 being fully persuaded that God had power to do what he had promised.

Take that OMS!

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