Following my instincts

The funniest story I heard about “following your instincts” as a parent was when a friend was trying to get her husband to have a more instinctual way of soothing their newborn son.  She handed their crying newborn to her husband, and asked him, “what are you instincts telling you to do”, fully expecting to hear “I should bounce him” or “shhh” or something along those lines.  Instead, he said, in a panicky voice, “hand him back to you?”  Ah.  Dads.

My mom instincts are generally in overdrive with you, Miss M.

This morning your dad took you to the orthopedist for a 6 month follow up.  The orthopedist said you were progressing great, he was really impressed with how well you have done in physical therapy (which he recommended against…).  A second set of x-rays show that you are likely fused C1-C2 and I think it was C6-C7 but you may have some “mobility joints” in between – we’ll continue to get x-rays to monitor whether those spaces open up or not as you grow.  We were worried about your arm range of motion, but he thought it was pretty good, he didn’t see any anatomical issues (that we didn’t already know about) except maybe a slight Sprengel’s deformity on your right side, which might explain some of the decreased range of motion on your right side.  Sometimes they do surgery on Sprengel’s, but he said it is mainly done for cosmetic reasons, and the outcomes were often not great and left a lot of scarring in that area (which is consistent with what I’d read online…). But the main reason your arms have slightly decreased range of motion is because the muscles are attached higher up on your neck because of the KFS.  Everything is just tighter…which is why we will be continuing physical therapy.

This orthopedist is the individual who first diagnosed you with Klippel-Feil syndrome.  And then told me nothing about how the syndrome will impact your future abilities, and specifically recommended against physical therapy.  My instincts did not accept this limited answer to the many questions I had.  I guess I expected that when you get a diagnosis, you get a handout on that diagnosis listing associated conditions, complications, treatments, support groups, etc.  Maybe not all of these things but some information at least, right?  Not so, in the case of rare diseases.  When I asked where I could get more information, they sent me to a general orthopedic society website.  Not exactly comforting, to know that you doctor doesn’t have any answers to your questions – “see you in six months.”  In six months, she’d have missed multiple major developmental milestones – rolling over, sitting up, and crawling.

Instinctually, I knew we could do more to help you.  So we sought second opinions.  The other pediatric orthopedists said the same thing – just wait and see.  I knew we could do more.  So I kept asking every doctor we saw, what they thought, what should be done, who should we talk to.  Finally, someone suggested we see a neurosurgeon.  I put in a call to the neurosurgeon’s office, and went through a lengthy explanation of why I was calling.  I could tell the nurse practitioner was uncertain about whether to make an appointment for you or not, so she told me she’d call back.  After talking to the surgeon, she made an appointment.  A few weeks later, I again felt like I had to justify why we were taking up this appointment slot. But the neurosurgeon was understanding, provided his opinion that she should have physical therapy, and said, you know, while you are here, it is probably a good idea to refer her for an MRI and just make certain nothing else is going on with her spinal column.  And that was the MRI that diagnosed your tethered cord, so we were able to get you in for surgery when you were 6 months old, rather than discovering incontinence and neurological damage when you were older and it was too late.

Seriously, one of my proudest parenting moments.  I knew that wait and watch was NOT the solution.    And now, 8 months later, you have had your cord detethered and have had 5 months of physical therapy, making you a rolling, scooting, and now even pulling-up, machine of a little 18 pound baby.


1 Comment (+add yours?)

  1. Trackback: Early Intervention « kfscutie

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