Thursday, April 4, 2013

In the usual 'busyness' of a general week around here, things fly by pretty fast.  Between the have-to's and the want-to's, things get rather blurry and messy.  Keeping your head above water becomes the new normal, and anything beyond that is luxury.

We did find out Mas seems to be a leftie.  The only reason that's notable is because he is 15 years old and has never really shown a preference.  (In fact, for years, he never knew his hands were attached to him....was quite the thing to watch once he figured it out!)  We've always assumed he's ambidextrous.  (Or, ambihandrous, as our friend Roger likes to refer to it!)  Our observant OT noticed he was spearing food and dipping food beautifully with his left hand.  We tried isolating the left hand at home, and voila!, he seems to have almost 'normal' hand function in his left hand.  Very cool to see.  I'm not sure where the wild/flailing hand movements began, but according to hindsight, it seems to be related to his continuous and long-term use of Reglan, a motility med he was on for about 8 years to help push food through his system.  It seems Reglan has now been tied to ataxia, which would explain why his arms sometimes have a mind of their own.  As my husband likes to say, any medicine is poison, and I guess I have to agree with that.

In other news, we had a troubling encounter with an oldster in Culver's the other day.  As we were walking to our booth, an old man was laughing at Mas, and his wife said to him, "What are you laughing at?"  Then I heard the man say something about "that boy."  I wasn't completely positive what he said, so that kept me from destroying him with my fists, but it is troubling when someone who should know better is so blatantly rude.  Again, the majority of people are awesome to us, but it's the minority who stick with you.  I am usually too flustered to reply when those things happen directly, but I need to get better at it, because holding on to it only feeds frustration and anger later.  Too bad people can't just ask what's wrong with him or keep their laughs to themselves.  I find the older generation to be way less forgiving of Mas and his behaviors than the younger.  Probably because kids like Mas were just locked away back in the old days, so to see them out and about is most likely off-putting to the oldsters.

We are currently waiting for insurance to approve his genetic bloodwork.  As it turns out, the bloodwork in question only costs $1600.  I say, 'only,' because he has had a lot more money than that spent on him in the past, in the name of diagnoses-chasing.  We wait, impatiently, knowing that with the small fee of $1600, we could have some answers.  Which would yield plenty of positive things, not the least of which is psychological; to have a cause to identify with, a t-shirt to wear, meetings to attend, parents to compare notes with, and an answer if someone would ever get the balls to ask what's wrong with him.  The genetic counselor who prepared the insurance letter said, 'this family deserves answers.'  And I thought, yes, we do.  Fifteen years is a long time to sit and wonder what is wrong and how to go about fixing it in the present and avoiding it in the future.

In the midst of our busyness, is a spring break where Mas is spending the week at home.  It got me to thinking the other day, how so many people think we are whining or complaining about his care.  I realized a major difference in how his care is viewed.  If you spend 20 minutes to one hour with Mas, you may think, 'that isn't so hard.'  Try spending the day with him.  Or two days.  Or seven.  Or fifteen years.  I think the exhaustion factor comes in for the 'constants.'  The people who are constantly with him, constantly wiping up drool, constantly changing diapers, constantly worrying over safety, etc.  Remember that when thinking about any 'special' families you may know.  What may seem like a manageable situation takes on a different hue entirely when you think of the complexities of long-term care.  Anything is manageable in small bites, but to have to eat the same meal for years and years gets more difficult.