Results

The boys' specialist called me with the muscle biopsy results.  We don't have conclusive answers as to which myopathy the family has.  We know that it's not any dystrophy.  We know that it's not nemaline myopathy.  Beyond that, we have more testing to do.  Muscle changes were present to conclude a myopathy, but not distinct enough to know which one from the biopsy alone.  We may know later.

I'm much happier with the doctor after these last few months.  We had a rough first meeting.  It happens.  I've had time to do my own research, which I usually avoid.  The first rule of being a special needs parent: Don't Google It.  The second rule?  Never Read A Blog.  I feel free to laugh at my second rule now.  This blog is absolutely not informational for any specific condition.  It's about having a place for my own emotions and thoughts, so that I don't bring them into an office visit.  I break my own rules, and it's ok.  I have information that I'd rather have straight from the doctor's mouth.  That's ok, too.  We get what we need.  We do the best we can.

We will do blood tests to further the search for which specific disease this is.  We'll know one day, and we'll go forward.  We're on an amazing journey.  It's not going to be all spelled out and smooth sailing.  As a consequence, we won't be phased by other challenges in life.  That which dismays another family won't even make us blink.  We have our own song to sing.

Aged Meat

We have to wait a month for the results of the muscle biopsy.  At first, I brushed it off to the thought of so many diseases to consider.  I then deliberated that there must be such a limited number of specialists trained in the pathology of muscle diseases.  They have a backlog of patients, and no way of every getting more than a month behind in work.

And then I remembered.

Aging meat takes three to four weeks for the enzymatic processes.  There are structural changes in the muscle fibers after a month.  Previously, I only knew about this from hunters and high-end steak houses.  A small portion of my own child's leg muscle currently ages.  While this realization doesn't negate the first two thoughts I had, it does creep me out.  Not that I am squeamish - oh, no.  It's my child, not a deer or a side of beef.  Part of his muscle needed to change in this way to show the pathologist the damage or the abnormality.  I am unnerved for the seriousness of the test.  A needle biopsy would have been easier, if less appropriate for the conditions we suspect.  Not only would it have been easier physically on him, but easier on us mentally.

We will know soon enough the results of the muscle biopsy.  It is only one short month.  But, forever more I'll know that a small piece of his leg muscle was aged.  I may never eat at a high-end steak house again, even if I could one day afford it.  It would only remind me of this waiting time.

Getting Measured For A Custom Wheelchair

After a week of a loaner wheelchair, Balthazar was measured for a custom wheelchair.  We drove an hour to the orthopedic hospital for his appointment.  I had to arrange pick-up from preschool for Caspar, so we could make the appointment time.  Balthazar didn't quite understand that the chair he's had isn't permanent.  He's happy to wheel around and do tricks.  Once he gets the permanent chair, there will be no stopping him.  The current chair is slightly too big, and not quite meeting his needs.  The new chair will be his for five years.  It will adjust as he grows.  It will be his favorite color.  I still can't believe that it was this easy to get a wheelchair for him. After so long of knowing that a part-time wheelchair was for him, to finally make it happen was almost too good to be true.

We had the fitting, and measuring and an hour of questions about what his needs are.  We described our one story home, the car, the stoop at the front door, the lack of ramp, but application for one, etc.  We looked at wheel sizes and colors and clothing guards and backs and padded seats and push handles.  Now we wait for the developmental pediatrician to sign off on the application.  Then it goes to insurance for them to approve the payment of it.  Then the manufacturer makes it.  It goes back to the orthopedic hospital for the final fitting.  In four months, he should have his chair.  Thank heavens that it is this easy and seamless for us.

A Wheelchair, At Last

For the last year, I've realized that part-time wheelchair use meets Balthazar's needs.  I've asked at the last two developmental pediatrician appointments.  Each time I was told no.  Now that we know the boys have a congenital myopathy, a wheelchair is appropriate.  I didn't have to fight, or justify how we would use it.  I already knew exactly what to say, having had so many months to prepare.  It was seamless.  It was the longest developmental pediatrician appointment ever.

After the clinic appointment with the pediatrician, nurse practitioner, dietician, nurse, occupational therapist, and physical therapist, we took our referral to the social worker.  There we picked out our durable medical equipment provider, or DME.  We selected the same DME we use for other supplies.  Then we went to the mobility department in the occupational therapy room.  We made the appointment to have Balthazar fitted for his custom chair, while they found a loaner chair for him.  The day was running so long that I had to leave to pick up Caspar from parish nursery school and take Balthazar to occupational therapy.  I went back the following day (after a lovely evening with a friend and like-minded mother,) to pick up the wheelchair.

Balthazar took to it naturally.  He was steering instantly.  He could break, turn and reverse without instruction.  The only suggestion he needed was to use the metal instead of the tire for a handhold.  We gave him the chance to wheel up and down corridors.  We was able to engage others in conversation instead of falling and struggling.  His outgoing personality could shine instead of being drained by physical exertion.  We made time for a museum trip.  I had to restrain him from going to fast, but otherwise it was a delight.  He could keep up with us in the chair.  He could actually look at the art.  Instead of being frustrated and drained myself, I could experience the joy of the afternoon.  A part-time wheelchair is a long-overdue delight in our lives.

"God Only Gives Special Children To Special People"

"God only gives special children to special people."

So much of the time I feel judged in public.  I feel glared at with hostility or pity or contempt.  I'm used to condescension.  I 'm used to trying to get out a public place quickly when my son with a neurogenic bowel has experienced incontinence.  People in general rarely say nice things to me, when they don't know me.  At best, I receive, "You sure have your hands full," which many mothers of more than one hear.

I'm so happy that another family got to read that note.  If it were me, it would mean more than paying the bill.  Not that I'd mind the bill being paid.  The words - ah, that was the real bonus.  If only more special needs moms heard positive comments, it would make all those public moments so much easier.

The Muscle Biopsy

My eldest son, Balthazar, had a muscle biopsy.  I was perfectly calm until the drive down to the hospital.  At this point, we go to so many doctors and hospitals, I can't get nervous anymore days before an appointment.  Even day surgery is fairly routine.  However, we now know that no anesthesia will ever be routine again.  Congenital myopathies can come with serious, fatal consequences to anesthesia.  We did the biopsy in part to determine what the risk is.  There are many other consequences of a myopathy, but it was the anesthesia complications that really threw me.

He did just fine.  The anesthesiologist assumed that he did have malignant hyperthermia.  He underwent the clean technique for the procedure.  He came out ok, and went home at the earliest time.  By late afternoon, no one could have guessed that he'd had a high-risk surgery that morning.

Now we wait one month for the results.  It will be long and challenging.  We may or may not have a diagnosis.  This could very well be the first of a long series of tests.  None are likely to come with anesthesia, though.  We will avoid all but the most necessary anesthesia procedures until there is a cure for whichever congenital myopathy this is.

The Diapering Dilemma?

I haven't called paper diapers "disposable" diapers in years.  Now, I think the rest of America may start following me with the newly reported knowledge some mothers reuse diapers.  Paper diapers, that is.  Those of us using modern cloth diapers aren't ashamed to admit what we do.  In fact, we're advertising our cute patterns and blogging about our shopping finds.  Have we not been vocal enough about options?

I think anyone can agree that dumping out a supposedly disposable diaper and putting it back on the child is appalling.  That mothers think they have no alternative, though, is heartbreaking.  Diapers are a need.  The convenience of disposables is not.  Sadly, none of the recent articles addressing the report in Pediatrics mentions modern cloth options.  One report even showed a photograph of diaper pins.  Most cloth diapers have velco or snaps, tight fit and are easy to use.

Not one mention of hybrid diapers appeared, either.  And yet, that's clearly what those moms are yearning for when they reuse a disposable diaper.  Hybrid diapers consist of a cloth cover, with either disposable or cloth liners.  They are even widely available at Big Box chain stores, like Target.  They can be used as disposables when budget permits, but like cloth other times.

But what about the argument regarding washing diapers?  That many of the moms who are struggling financially also don't have washing machines?  I smelled a rat.  According to HUD, 84% of US homes have a washing machine, and 81% have a dryer.  If 30% of US moms are struggling to buy disposables, then about half of those do have the option of washing at home, (and that's assuming the worst from interpreting the statistics.)  Why not pressure laundromats to devote just one machine to high temp washes, as would be appropriate for cloth diapers?  Surely there are more solutions than just assuming that convenience products are the only option.

It's a shame that the mothers most in need of information about their options are the ones not getting it from their pediatricians or the media.  More mothers need to know about cloth options than just the upper middle class moms with time to consider their eco-style.  There is a diaper crisis in the US, but it's a lack of information, not a lack of access to convenience.