When we were plunged into our health journey, we had never heard of gastroschisis or short bowel syndrome or TPN or a Broviac or a Mic-Key button or any number of other things. Our world suddenly became very narrow, and very deep. Among those things we had never heard of, however, were a number of organizations and resources available to help families who find themselves in our shoes, which I’ve recently gathered on a shiny new resources page linked in the black bar at the top of each page on this site.
One of these is Avery’s Angels, a foundation dedicated to gastroschisis research, awareness and family support. One of the many amazing things they do is a “Warrior’s Christmas” program, through which they provide Healing Helpers to kids who face ongoing medical challenges due to gastroschisis. And this year, L was chosen as one of their Warriors.
Meet Raphael the Girl Tiger:
(Cousin C, I think we may be inadvertently channeling Hank the Girl Cat.)
With all the boxes of medical supplies that show up on our doorstep (see those boxes of Pediasure stacked over there?), you’d think L’s enthusiasm for opening packages would have been tempered by this point. But he is continually elated to open each box to find out what’s inside, and this time the contents did not disappoint.
Raphael the Girl Tiger has had intestinal surgery that left a scar just like L’s, and she also has a g-button and scars where her line and her ostomy used to be.
Here, L is performing primary closure:
L has never been attached to any one lovey or blanket, but Raphael the Girl Tiger has quickly become a bedtime staple. And, in true short gut fashion, she’s already proven admirably resilient when it comes to being puked on (I’ll spare you the photos on that one).
L, Z and I send our love and thanks to Meghan and the entire team at Avery’s Angels for Raphael, and for the important work they do each day to help families going through medical hell or unimaginable loss.
If you know of any organizations, blogs, or helpful tips that should be included on my resources page, please let me know!
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