Many people have asked what Max and I do at the hospital when we go everyday and we thought it would be a good idea to start keeping track of all of our visits so we decided to get involved in a program that is called beads of courage. It is a neat program that gives kids a special glass bead for each nasty procedure, poke, dr appt that they have to endure. We hit our month anniversary of Max’s diagnosis and in 30 business days Max had 50 outpatient dr appointments at Children’s Hospital. In recording this for beads of courage he has had 8 procedures requiring anesthesia (MRI, CT Scans, MIBG, X-Rays, etc), 1 Bone Marrow biopsy, 1 Bone Marrow Aspirate, 1 day of Chemo, 8 clinic visits with our oncologist, 1 ER visit, 4 days of PCA infusions, 8 days of spending the night in the hospital, 1 port placement, 1 lumbar puncture, 1 surgery, 2 days of IVIG transfusion, 3 tube placements (NG, Breathing/Chest tube, and a foley), 15 appointments/evaluations with other team members (OT/PT/Speech/Opthamology/Audiology ,etc), and 18 successful pokes, IV’s, port accesses, blood draws, etc (that’s not counting all the misses). Max gets a special color bead for each thing he has done. We have counted that he is eligible for 61 different kinds of beads! What an accomplishment for a little guy in one month! Daddy says that boys don’t wear necklaces so Max can make a pretty necklace for his mommy. =)
Here is a news report from CBS that was aired this month.
Perhaps boys don't wear necklaces, but are there other options so Max can wear his beads himself? I'm sure these are badges of honor amongst the other kids at Children's. What about a vest where the beads get sewn like a military officer's campaign ribbons? what about wearing a belt made of cords, with the beads threaded on? C'mon, let's be creative here...
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