Wednesday, January 29, 2014

WAGR Wednesday! Nine Inch Nails~Not!



Happy WAGR Wednesday!  I think I’m succumbing to the cold that is going around here in our little town, so I will cut to the quick on this one.  (Pun TOTALLY intended.)

I’ve heard other parents of children with WAGR say the same thing:  I’ve never had to clip her nails.  That holds true for me as well.

Sure, when Evie was a baby, before she cut her teeth, I would clip her baby nails with those teeny-tiny tweezers.  But, when she was starting chemotherapy, the doctors and nurses had instructed us not to clip her nails, because if they were cut too short she would be susceptible to developing an infection through a small cut.  She was 15 months at the time, and I haven’t cut her finger nails since then, in over 8 years.

Evie bites her nails incessantly.  Of course, it’s hard for me to judge because I have nail-biting issues of my own.  However, hers are chewed down to itty-bitty nail nubs.  I’m certain that it’s all a part of her anxiety, but it still makes me so uncomfortable to watch her gnaw away at them.  We’ve gotten her “chewies” and “chewelry”, rubbery items which are intended as occupational therapy for those with sensory-seeking behaviors (part of Sensory Processing Disorder).  But, for Evie, there is nothing as satisfying as the real thing. 
 
On the flip side, Evie’s toe nails grow at a curved-in angle and RAPIDLY.  If I don’t keep on top of their growth, I come to find that she has broken them off jaggedly, or they have grown almost into her skin with the curvature that they have.  This, again, is a similarity which other parents have observed in their children with WAGR.  

That’s what’s crazy and fun about our on-line support group.  We might, without realizing it, mention something about our children, like the nail-biting, and then a chorus of voices chimes in with “Me too!  That’s what so-and-so does!”  I call that the “Me Too” Bird. 

Maybe that’s what I’ll write about next week on WAGR Wednesday; the sighting of the rare “Me-Too” bird which happens every year on WAGR Weekend.  When you are so used to being “the only one,” but then you find yourself in the presence of a whole “rare species” of others; well, it’s magical (and only 6 months away!).

If you have a WAGR topic you’d like me to write about, feel free to post it in the comment box below!

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