A Great GI Appointment

We had a great gastroenterologist appointment this afternoon.  Yet another physician is aghast at the assessment of the neuromuscular specialist.  Even better, we no longer need a GI.  We still have access to her, should the needs change.  At this point, his care can be managed by the developmental pediatrician and the pediatric surgeon.  We are well trained and well informed.  My eldest was given an excellent assessment today.  His progress and hard work are evident.  Our progress as a family is apparent.  We can back off from all this oversight, just as the primary care physician recommended.  We don't have all the stress of children not growing or eating or thriving.  They are.  They will.  Whatever may arise with the actual muscle diagnosis won't stop these children from growing and changing just they way we want the to do.

Orthotics, At Long Last

After years of asking for them, I finally have a prescription for orthotics for my eldest child.  At last, he's going to get the support that he needs for his ankles.  It's been a frustrating journey, since his need is not quite under the dominion of his developmental pediatrician or his orthotist.  I will tip my hat to the neuromuscular specialist for that.  We were able to find the niche, due to her bias towards her own professionals.  We won't be going with them, of course.  They are an unnecessary travel expense and frustration.  But the company that makes them for her orthotist is the company that will provide them.  Our family physician wrote the proscription for us.  We'll go to another orthotist, and skip the wait and frustration.  The support is not that much longer in his future.  Hooray.

Paying Attention to the Children, Not Their Diagnoses

This week, we haven't had a doctor's appointment at all.  All week, we've only had therapies.  On Monday we toured a private school for the second and possibly the third child.  Instead of reviewing all the symptoms and signs of problems, we've had what for us appears to be a normal week.  Five therapy sessions might not be quiet for some, but for us, it's down three from the usual schedule.  Add in an absence of doctor's visits, and we're sailing through the week.  We've had lots of playing in mud puddles, walking through the grass in bare feet and examining seedling sprouting from the earth.  We've had time to smell honeysuckle on a nature walk.  It's wonderful.  For us, we've come much closer than we typically do to normal family life.

I've had time to look at my kids through a mother's eyes instead of a case manager's.  It's better for them, and more accurate I believe than where we've been.  I see boys who are growing up and getting stronger.  I see their spirits and their motivation.  I can see where they'll be going to school.  I know that the assessments that others have put on their medical condition is too limited for fairness.  I turn then to other points of view, including the primary care physician.  These kids are out on their own path.  They have their own song to sing.  As a family, we are a harmonic voice.  We won't be pigeon-holed by unfair limitations.  I started out that way as a first-time mother, and was derailed by too many opinions along the way.  I refuse to cower to the tyranny of low expectations.  We won't conform to the conventional approach.  We're going to walk our own path and be true to ourselves.  This means that we won't earn respect from those who only respect following the crowd.  We won't be esteemed by those who prioritize conformity.  But for use following the crowd and conforming was never really an option.  Following the crowd meant identifying their birth defects prenatally and terminating their pregnancies.  Never giving them a chance would have been the recommendation of physicians had I followed convention then.  I'm not going to be swayed by those opinions now.  Not when they don't even know what they are missing.

An Even Better Day With the Pediatric Orthopedic Surgeon

As great as the day was with the craniofacial specialist, the subsequent appointment with the pediatric orthopedic surgeon was even better.  He doesn't believe that the boys have a non-progressive or a slowly progressive condition.  He thinks they are getting better, specifically getting stronger.  He brought in residents , a med student and the boys clinic physical therapist.  I'm used to that at this point.  I know how valuable my boys are to professionals' education.  This was a bit different.  The surgeon took the opportunity to explain to them why their condition is not muscular dystrophy.  He explained the clinical presentation ruled that out.  The manner in which they exhibit the Gower sign and the muscular expression of their upper chest and scapular area are not commiserate with a dystrophy.  He then said that they will not require surgery or treatment.  He said that we have plenty of doctors on the team, and that he's going to back off because we don't need him.  He's one of the doctors that I was certain we would need.  I'm so relieved that this will be unnecessary.  We will still have access to him, if their condition changes in the future.  It's the best possible outcome of that appointment.  While they still have some disorder, it's likely not fatal.  He made a point of educating the residents on how the clinical presentation demonstrating that the boys are improving.  It's wonderful.