Charles Van Bunklin, meet Robert Van Winkle

With my dad, who is the primary daytime babysitter out of town on a photography expedition, Lindy and I called in the reserves from out of town: her mom came down from Lindy’s hometown in Michigan for the week to get some good “Na-Na” time in.  Lindy had been up in the great north for a fundraiser for the Michigan Chapter of Armand’s Hope which raised a lot of money for him.

During the week, Armand was fitted for a new part for his gait trainer, which the company calls The Mustang.  The chest piece that came with it was too large for his tiny little frame, so his physical therapist had been attempting to find a way to order us a new piece without us or insurance being charged a second time.  After some wait, we finally got the new part, and now Armand can “roll in his 5.0, ragtop down so his hair can blow“.  We’re hoping that once the weather breaks just a little bit more, we can get him out and about using both his Mustang and his Tryke that was donated to him for Christmas.  He really has regressed to the point that his mobility is almost zero without help — whereas less than a year ago, he would make his way around my apartment looking for his jacket so we could go on walks together outside.  Both of these items are a good way to get him mobile, and also build some strength and some confidence for him.  He’s fighting so hard, but the last few months seem to have taken a toll on him.

If you follow our facebook page (and please, share it and this blog with all of your friends), then you’ve heard about Armand’s dystonia attack or episodes.  He had eight in one day last week, and one or two more a day for most of the rest of the week.  They don’t last long, generally a few seconds, but they are both scary and visibly painful.  He’s not getting accustomed to them (and who could blame him), and they seem to wear him out — he naps  many times after an attack.  Oddly, tho, once he has calmed down and his body has loosened up, and he doesn’t want to just sleep, he’s really normal and okay.

Finally, yes, Charles Van Bunklin is a new nickname.  He’s also aquired Bunky Cold Medina, and The Natural Bunkular (from a mis-heard song lyric).  I wonder if Lindy is regretting letting me name him since I’m pretty much the only one who doesn’t call him by his name.

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