T+100!!! National MPS Awareness Day

Today is 100 days since Torie's stem cell transplant and National MPS Awareness Day, so we are wearing our purple to show our support for Torie and our Hurler family. There's not much new here. We got quite a bit of packing done, and shipped a bunch of stuff home. Tomorrow we'll start cleaning and continue packing. How did we get so much stuff? Oh yeah - everyone has been so thoughtful and caring to think of us!

Since I don't have much else to blog about, I thought I'd tell you about the"Beads of Courage". These are for kids who go through life-threatening and challenging ordeals. There is a tally sheet and we keep track of procedures and triumphs. Torie has a ton of beads! Here are the colors for each procedure that she's had...

Beige.....Bone Marrow Biopsy

White.....Each day of Chemo

Orange.....Hickman insertion

Blue.....Clinic visit

Magenta.....Unusual occurrence/ER visit

Brown.....Hair loss

Lime.....Isolation/Fever/Neutropenia

Tortoise.....Lumbar puncture

Purple.....Morphine/TPN

Black.....Pokes

Light green.....Tests/Scans

Red.....Transfusion

Aqua.....Tube insertion

Yellow.....Each night of hospital stay

Silver.....Dressing changes

Bumpy.....Medication challenges

Star.....Surgery

Rainbow.....Physical, Occupational, or Speech Therapy

Textured Silver.....Chaplain visit

Special Selection.....Act of Courage, Extraordinary experience

As you can see, Torie has more of some than others. Especially those yellow and purple ones! She loves stringing her beads and she's very proud of how many she has!

Please say a prayer tonight for all our Hurler family and our other friends. This experience has opened my eyes to so many different things that I've never known before. Most of all, the impact that friendship, love, support and prayer has on all our lives.....Vic-Torie!