Wednesday, May 07, 2008


So we continue to go down on Robert's Sinemet.  We give it three times a day and are going off one dose at a time each week.  The mid-day dose went last week, which was a gift to the school and Robert's education, as it must be crushed and mixed with applesauce and water to get it through his g-tube.  It's only soluble in lipids--so, like a cup or so of olive oil or something, if we didn't use applesauce to suspend it. Yum! What always gets me are the elaborate rules for giving medications at school: school medication form filled out by doctor, instructions on form must match prescription label, prescribing doctor must match form, medication must be brought to school by a parent, if tablets need to be cut in half must be done so by a parent in front of the nurse, the same person who mixes up the medication must administer it (which nixes preparing the syringe in advance and having it ready ahead of time), Robert must be brought down to the nurse's office.  

This is only one small subset of the rules, regulations, and procedures by which my family lives: not just the school, but the tube feeding routines, the PT stretches, the use of the walker and stander, and the daily rounds of care tasks: diaper changes, clothing changes, face wipes, finger nail clipping.  

At this point, it's all just part of our lives--but that sense of freedom or possibility of freedom from routine--the idea that one could go off medications, that things might be OK, that we could keep getting released slowly from some of these routines--that lure of personal freedom is so intoxicating.  As though release from these small things might release us into some alternate reality!

I conquered the horrible new walker yesterday.  When we saw the neurologists in Baltimore last week, they sent in a PT to check with us about what home stuff we had, what we were doing.  I used this opportunity to vent about the Rifton Pacer gait trainer we had been talked into by the seating clinic and the DME vendor a while back.  Robert had been using a different gait trainer, after abandoning ship on the Rifton brand a few years ago, and we had been able to use it and get other care givers to use it because it didn't require a degree in mechanical engineering to get the child in it.  You looked at it and said, no matter how stupid I am or feel today, I can get this kid on a seat that tilts forward, and snap a safety strap around his chest.

The Rifton Pacer is something that physical therapists drool over: 9 zillion adjustments!! Arm rests that rotate on two different planes!  And also slide back and forth two different ways!  Arm rests that you can manipulate in four different, yet overlapping, planes and angles!  

I look at this and say, I am so tired of complication and complexity at every level of our lives.  I want to NOT put my child in this just to have the perverse satisfaction of copping out on something.  Perhaps my husband should be the crash dummy on this one--perhaps he should learn to do this.  He does not.  I do not.  We wish the walker would vaporize, absolving us of our mutual guilt.  It does not.  It remains purple and covered with straps, rotational devices, obscure clips, latches, straps, and buckles.  Oh, the arm rests are only the half of it.  

The walker comes with a DVD to "help" you use it in which all the PTs and parents and children try to make you feel guilty that they find it so simple and helpful (you do not, ergo you are stupid).  I know they are lying, just as I knew the 70-year-old actors in the videotape I had to watch before my cardiac catheterization were lying SOBs--oh, no, doctor, it doesn't hurt.  It was so much easier than I expected.  You were right, doctor--it was a breeze!  (My experience with this miracle procedure: I lie to the nurse and tell her my Valium is not working--you have to be conscious while they insert this needle and thin tube in your thigh and it winds up into your heart--and she gives me so much more that I swear I am at the beach drinking daiquiris while this procedure is going on.)

I decide yesterday that I have a PhD.  Granted, it is in Renaissance poetry, and English poetry at that, but it must mean something about my intelligence, hopefully positive.  I stare the machine, straight out of the Terminator, down.  I have the sudden idea that if I stick him in the chest support that tilts forward without fastening it first and keep a hand on him before his knees completely sag out from under him that I will have just enough time to grab the oddly-shaped "saddle" and pull it up between his legs, hooking the giant loop over the bizarre hitching post on one side, before he falls through the walker and lands on the floor.  This requires a huge amount of strength.  I hitch the other side.  Robert does his typical sitting on the saddle, because, after all, why stand when you can sit?  I then spend over 20 minutes disassembling and reassembling, rotating and clipping the freaking arm rests before they seem to be where his arms are now after a lot of spasticity has released from his body in the last two months since we even attempted getting the child in this machine from therapy hell.

I decide the PhD must be worth something.  That, or this is the influence of my father, who spent time in the military, and taught me how to pack every square inch of a car trunk with no gaps, a skill I can also apply to loading my dishwasher.

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