Wednesday, September 18, 2013

Beads of Courage!

 Owen got a very special package in the mail yesterday. Last year when we were going through all the medical issues I blogged about here and here, I learned that Beads of Courage had a distance program for kids whose hospitals didn't participate in the program. I filled out the form for Owen and received a notice that the distance program was closed to new patients. They expected that the program would open up again after the first of the year. A few months later I had completely forgotten about applying.


   A couple of weeks ago, I got an e-mail saying that the program had opened back up and Owen was accepted! I got to work right away counting up Owen's eligible treatments and placing his first order. The first order is called a "catch up" order and is a little different from future orders. "Catch up" beads consist of special beads and one bead from each eligible category. From now on Owen will get one bead each time he receives a treatment.


 I was a little shocked when we opened the box, I hadn't expected so many beads! There are a few treatment categories that still get catch up beads for each treatment, not just one per category and Owen had a lot of beads in those categories!
 Owen spent over an hour playing with his beads and stringing them. He was so cute holding the booklet explaning what each bead represented and "reading" what each of the beads was for. Luckily he decided that rainbow beads were his favorite since he got more of those than anything else.
 It is really amazing to have such a tangible representation of everything he has gone through. Owen wore his beads all day and was just beaming. The amazing thing is that this is only a small portion of Owen's treatments. One bead on this string represents ALL of his ambulance calls. Another bead stands for all of his clinic visits. Twelve EEG's are shown with one bead. If we had been on this program from the very beginning, I don't think Owen could wear his beads and still be able to stand up!
Owen pointing out what his beads stand for.
 The star bead is for having his PEG tube put in. The rainbows are for care team visits. The bright pink one at the bottom is for ALL of his ambulance visits( almost 40).

  The oval millefiori beads each represent 100 treatments, Owen has 4 of those and a good start towards his fifth! Owen is part of the chronic illness program. There are a few other specific programs, but in his program there are only two categories he didn't earn beads in.
 I'm so thrilled that we were able to start this now with Owen just initiating the ketogenic diet. This is such a great incentive for him. He's old enough now to understand that he will be eligible for beads after all of his procedures as well as for complying with the diet. I have to admit that it's also great for Rod and I to have such a tangible reminder of everything we've all been through. I just can't say enough good things about this program!






4 comments:

  1. Replies
    1. Apollo should have some fish beads, they are for transferring to different hospitals or traveling long distances for care (not just every visit. Owen got his for the airlift to Children's(the first time, the second didn't count since Children's was already our hospital) and then switching to Swedish. Flying to Texas would definitely earn Apollo one.

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  2. Apollo has one for his trip to Texas...I know they are for traveling, that's why I wondered about Owen's. I didn't realize they also counted for switching hospitals.

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