Wednesday, July 16, 2014

Taking the Bad with the Good

That's what life is made of isn't it, the light and the dark and all the shades between? We've had developments at both ends of that continuum this past week. I don't know about you but I like finishing on a high note so let's just get the low point out of the way first shall we?

Those that know us will recall that Little Man has ongoing issues with being able to pass his stools. To short cut for those that don't, Remember those old "Buns of Steel" exercise commercials?  I don't know off the top of my head what metal is stronger than steel but all of Little Man's lower digestive tract is made of whatever it is.  Without an enema he will never give a shit. Seriously. Never.  (Sorry for the rude language but really how could I let that one go by?)  we've been to all kinds of specialists and tried more therapies than you can imagine. Where we are at is what we've finally come to as the best of the bad choices we have.

In spite of being the best of the worst, the weekly dosing needed to cause a bowel movement is still a truly miserable time for all of us.  He lets loose both ear and heart shattering screams during the administration process.  After that he wants me to kneel by the throne and hug him while the medication does its thing. Aside from the unpleasant location and the unbelievable stench that comes with passing a weeks’ worth of waste, there's the extra helping of guilt that layers on when he wants me to comfort him from the misery I just inflicted. 

 And now, just as of last week, to make the whole business more painful (literally) he has officially become too strong for me to manage on my own. I hobbled away from our last encounter with 3 bruises, each more than 2 inches in diameter, that blossomed into a gruesome black green yellow combo and a fairly impressive knot on my head. Thankfully, I was able to complete the procedure without inflicting any return damage but I'm pretty dang sure that this has just become a two man job from here on out.  Trying to find the silver lining in this my darling husband pointed out that all the physical therapy Little Man has been doing is really starting to show results in improved strength and gross motor control.  I let him live.  I'll need him for next week's unpleasantries after all.

Moving on to the more pleasant developments, Little Man has started TYING.HIS.OWN.SHOES!!!  This is huge for us, like beyond just my faux all caps shout.  It needs to be in letters 50 feet tall covered in glitter.  Most folks faced with serious fine motor control issues and problems with motor planning would just go for the Velcro or slip ons but that is not an option for us.  Little man has some real problems with his feet and he has to wear custom orthotics (you don’t even want to know what those suckers cost) and lace up shoes to insure his foot problems do not get worse.  We’ve been working on shoe tying for, well forever really, but seriously with his OT at school and in private sessions and at home for a year and a half now.  And suddenly one day he just did it.  I am so proud of him!  Not just for the new skill but for the patience and perseverance to keep at it for so long.  He just rocks!

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