Oakland Appointment #2

This post is a week late, but life got busy and the days slipped by quickly. So let’s get up to speed…

A few weeks ago, we left the house before dawn to meet a new-to-us neurologist in Oakland.  You can read more about that appointment here but the gist of it is that she listened to us and came up with an action plan.  And the best part?  She followed through!  She got right to work ordering an MRI for Ryder (which you can read about here), and intended to set up a multi-doctor appointment with an orthopedic specialist, a physical therapist, and a pediatric neurosurgeon.  The neurosurgeon basically blew us off (this seems to be a recurring theme lately), but the ortho and the PT were more than willing to collaborate.

So last Monday we headed back to Oakland to meet Dr. Kaiser (who works, ironically, for Kaiser), and Jody the PT.  The doctor ordered an xray of Ryder’s arm before we even got into a room.  We were relieved to see that his fractured humerus (which you can read about here) healed beautifully, and that area is now the strongest part of his arm because it has so much extra calcium.  Go figure.

We were impressed with the doctor’s thorough examination and willingness to listen (see?  another theme…).  He explained to us that there are orthopedic options for Ryder, but that we ought to reserve them as a last-chance scenario because they are invasive and permanent.  If we come to a point where we are no longer seeing any improvement at all in Ryder’s strength or function, we may be able to do a shoulder fusion (where they literally fuse the shoulder joint in place) or a muscle transplant, likely from his trapezius muscle.  There are lots of “but if… then” statements to complicate things (but Barrs never take the easy road anyway, so…) but it was kind of a relief to understand that possibilities exist.IMG_0931According to the neurologist, Jody’s role in our visit was to help us design a special “figure-8” brace to pull Ryder’s shoulder back into place.  Interestingly enough, both Jody and Dr. Kaiser (along with our OT and chiropractor) don’t feel that Ryder’s shoulder is actually out of place.  It just looks scarier than it is because his muscles are gone, exaggerating the sharpness of the bones.  They felt that we shouldn’t bother with adding another cumbersome brace into the mix, but that adding a belly strap to his sling would be a great safety mechanism.  Having his arm strapped to his belly will keep it from flopping up and down when he runs and jumps, and if he falls it’ll be safer to have it tucked right next to his body.

So Operation: Sling Redesign happened…IMG_0935It took some time to study photos of slings with “immobilizers” online and figure out how to make it work on my sling design.  But I’m pretty happy with how it turned out.  It’s a bit heavier than he’s used to because there are some extra nylon straps and two additional D-rings, but it’s sturdy and I think it looks pretty sharp.IMG_0941

I don’t believe in coincidences, but sometimes I can be a little slow to pick up on the cool way God orchestrates certain things in our lives.  I started fooling around with my sewing machine when Ryder was a newborn baby.  It was a novel way to occupy myself, save a little money by making or fixing things, and keep my creative juices flowing.  But I never could’ve imagined how God would use my therapeutic hobby to serve my family in this way.  It’s a great challenge to design something like this, but there’s a bit of pressure too.  If it doesn’t work, will it set back his progress?  Will it be comfortable?  Will it be “cool” enough to wear in front of friends?  I’m thankful that it does work and it’s as comfortable as a sling can be… and he can proudly sport his school colors every day, which increases the cool factor.

I got to see it in action for the first time at gymnastics, and it worked great!  He landed a few cartwheels (thanks to improved balance) and didn’t have to hold his arm down as he bounced across the tumble track.  Can’t wait to see how it holds up during soccer season!

Never satisfied with less than the best for our kids, we continued to press on our neurologist about getting some facetime with the neurosurgeon.  We have a few questions about some specific procedures that other kids with injuries similar to Ryder’s are having.  Like, “Why isn’t Ryder having these procedures?” for starters.  We even gathered the names of the doctors we know of who are performing said procedures and let our doc know that we are willing to travel to the ends of the earth if it means we can help our boy.  Thankfully she understood that we aren’t bluffing, and we now have an appointment scheduled with the neurosurgeon for the middle of May, thankyouverymuch.  

We are so grateful for the doctors God has led us to.  We’re confident in the minor tweaks we’ve made to his therapy regime, and are looking forward to seeing more progress in the coming days.  In the meantime, we’ll be getting plenty of use out of our season passes to the Oakland Zoo… We’d love to meet you there!IMG_0933

One Response

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  1. Charlene Alexander
    Charlene Alexander April 26, 2016 at 1:22 pm | | Reply

    Love hearing about every step along the way in this journey. Love you ALL so very much!

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