Tag: opscolonus myoclonus syndrome

Medical Issues, Opsoclonus Myoclonus Syndrome

Let Us Marinate

Barefoot Faith Journey

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 Bead 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 ignored 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, Osteotomy, Trach, Surgery Site, Others, & Skin Care

Glow in the Dark (2)

Echocardiogram

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 include Cath lab, biopsy, LP, casting, scope, shunt tap, IR, wound care, EVD, joint injections, aspirations, and others.

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 visits (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)

Transplant

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 than he has had in the last 2 years. This canvas is only the last 2 years of the 5 he has had since he has gotten sick.

Resiliency.

He is fantastic, brilliant, strong, capable, and able, and now he is HEALED. I never thought I would say that word concerning 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 the power to do what he had promised.

Take that OMS!

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Beads of Courage

Barefoot Faith Journey

Beads of Courage

Beads of Courage

We have been trying to get Beads of Courage since this journey began two years ago. I first learned about them from a fellow blog mom Renee’s Little Earthling Blog. Her son’s story was where I read about it.

Norton’s Children’s Hospital

We approached a nurse at the 3rd hospital, Norton’s Children’s Hospital, and she sent in the floor Child Life Worker to talk to me. This was H’s two-day IVIG/Chemo time at the hospital. We had to fill out a form to see if he qualified. There are certain conditions that a child has to have to qualify.

Cancer and Blood Disorders

Cardiac Conditions

Burn injuries

Neonatal ICU Families

Chronic Illness

Do We Qualify or Not?

 

In assuming we qualified, we had to go through a list of procedures. We had to count how many of each category H had from the past to the present—a daunting task. I sat for those two days, and I counted. I read lots of med reports and looked through my calendar to remember. H deserved every single bead because of all that he had been through with this illness.

As I painstakingly remembered and documented, I returned the document to the Child Life worker at Norton’s. We never heard another thing from them. They said he didn’t get to participate in this program at their facility because he didn’t have cancer.

Moving On

I never approached UK Children’s Hospital and UPMC about the Beads of Courage because I figured they wouldn’t let him participate either. The thought passed through my head a few times, but I let it flit on through.

Yesterday, at Vanderbilt Children’s Hospital, the thought came back up. I saw this honey of a boy walkthrough with a smile on his face from ear to ear. He was proud and excited. Yes, he was facing a long chemo day, which is problematic. Yet, he could take some time and string each bead on his necklace. As I saw that, I thought I would ask again.

New Day, New Hospital

Katie, our Child Life worker, came bopping over and said she was fixing to talk to us about this opportunity. I told her what had happened in the past. She just said that H qualified. Since we were never given the opportunity, things had changed slightly in 2 years.

She gave me the form (below), and I just checked everything he has done over the last two years. On the back, I wrote down the things that required great bravery: unique beads. Then, we calculated the days he had been sick. He received beads for every 100 days he was ill.

H’s Choice

H got to pick out a bag made by a woman in Arizona. He carefully chose each bead as Katie explained why he was getting it. That was not so much on his hearing level LOL. He just wanted to select the prettiest bead.

Beads aren’t the be-all and end-all, but it is something that he can know is consistent. Hospitals are not consistent. You have different nurses, different techniques, and different reasons we are there. Beads are colorful, bright, and exciting to kids. The BOC brings joy. He can sit and look at each and know that he did something amazing. He took steps to better himself and his health. He is strong.

When we all returned, I sat and looked through all the beads. I read the reasons why and then A did the same thing. She helped him sort them all out. He sat and strung each bead one by one.

Pure Joy

He was excited about the beads. I have seen some fantastic ideas on how to display them online. He earned three more yesterday, but we will get them on clinic day next month. He needs another 100-day bead, a stick bead, and a clinic visit bead. We will add it to his bag and string it when we get home.

Donate

You can always donate towards Beads of Courage anytime. The website I have highlighted above has a tab about donations of money or beads. The Predators donate money towards this program for Vandy. It gives you the chance to put a smile on a kid’s face.