Neurology Follow-up

We’ve been really intentional about celebrating every one of Ryder’s small victories.  But every now and then, it’s nice to have someone validate just how far he’s come since the initial onset of his symptoms.  Our neurologist has been working Ryder’s case since the beginning, but we haven’t seen him in about a month so I was excited to hear his impression of our warrior’s progress.

Looking at Ryder’s body as a whole, the progress is astounding.  He’s walking, running, and riding his bike.  He has learned to write and live as a lefty.  He can climb stairs with ease, play soccer, and balance on either foot without issue.  There is still noticeable weakness in his left shoulder, but it’s not as bad as it was before.

Dr. Masselink was really impressed by the increased strength of his right-hand grip.  New developments (since the last time we met with him) include flexion in the wrist, isolated movement in the pinky and thumb, increased shoulder strength, and active movement (while supported) in every muscle group.  He also elicited reflexive response in two different spots in Ryder’s arm – for the first time.

We asked lots of questions, including whether or not any new test results have come back.  The short answer is yes, they’ve all come back and they’re all negative.  That means that he’s still considered negative for Enterovirus D68 (the big hairy monster you’ve heard about in the news), but the doctor says it remains his leading theory.  The best news about negative test results is that he does NOT have Neuromyelitis Optica (NMO), an autoimmune disease that looks similar to MS in which the immune system attacks the optic nerve and spinal cord, and sometimes the brain.  Praise the Lord for his protection!

We also asked about vaccines.  We are 100% confident that Ryder’s condition has nothing to do with vaccines because it’s been a year and a half since his last one.  But the question was raised in a Facebook support group for parents of children with AFM regarding the safety of future vaccinations or boosters.  The doctor was confident that Ryder has no greater risk of complications from shots than he did before.  (By the way, this post is not intended to incite debate or solicit advice regarding vaccines.  We are confident in our decision to vaccinate our kids because it’s what we felt was best for our family based on all the research we’ve done over the years.)

Most of the kids who developed AFM were initially hospitalized for major respiratory illnesses including asthma attacks and pneumonia.  Ryder’s only respiratory symptoms were masked as a common cold.  To my horror, he’s exhibiting those symptoms again.  I know with the logical part of my brain that he’s likely suffering from seasonal allergies (Hello, almond blossoms.  You’re beautiful, but you’re also a pest.  Please go away ASAP, thankyouverymuch.) but I can’t help the worry that creeps in and makes me wonder if we’re in for another fight.  Thankfully, the doctor could see the worry on my face (I’ve never been very successful at hiding my emotions), and explained that there’s nothing to indicate that anything like this will ever happen again.  He’s a kid… he will get sick a million more times in his life, but in a very normal way.  <insert deep sigh of relief here>

“Normal” is a foreign word in our family.  We tend to end up with “rare” or “dangerous” or “severe” so we’ll bask in what little normalcy we can muster, even if it involves a snotty nose.

I wondered if this would be the last time we’d see our neurologist… if he’d feel that Ryder had progressed enough that he didn’t need to see him anymore.  But I was encouraged when he requested another follow-up appointment in three months.  We’ll never know what caused Ryder’s spinal cord to swell.  There is a lot about this situation we’ll never understand.  But we “trust in the Lord with all our hearts, and lean not on our own understanding.” (Proverbs 3:5)  I’m thrilled to know that Dr. Masselink wants to follow Ryder’s progress over the long-term because he will provide data for future victims of this terrible condition.  When other families are drowning in medical jargon and strangled by fear, they’ll hear about our brave boy and how he recovered.  And they’ll have hope.

We still have a long road ahead… but we have the best team, most supportive family and friends, and the Lord of Heaven’s Armies working together to conquer this thing.  Celebrate with us along the way, and please continue to pray!

Be joyful in hope, patient in affliction, and steadfast in prayer.
(Romans 12:12)

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