Surgery #7 … hello knee plates, again

Well, here we are sitting in the Nemours surgery waiting room, again, to have Robert’s “8 plates” put back into his knees (and his ankle hardware removed too).  I’m usually much better about posting on this blog in advance of a surgery, but I guess this is what happens when we’re on the 7th surgery.  We’re all tired.  Surgeries are now just one part of our story.

We may have been down this road before but it certainly doesn’t make it any easier.  In fact, prepping for this one has been emotionally harder on all of us, especially our sweet Robert.  We recently told Robert he needed another surgery but this one was “a lot less than he’s done before and not as big of a deal as his hips or neck.”  That wasn’t what he wanted to hear. All surgeries are a big deal, especially when he’s already had six of them.  He remembers his last surgeries all too well.  So many hard questions came … questions I’ve been bracing myself for since he was diagnosed in 2018.  The hardest: “Why me?  There are millions of people in the world.  Why did this happen to me?”  I’ve had years to prepare for that question but I still don’t have a good answer.  Robert’s outlook on life and positive attitude keeps us all going but surgeries are a hard reminder that this disease isn‘t going away and just plain sucks.

Thankfully when we walked into Nemours for pre-op appointments and tests yesterday, Robert walked through the doors with a smile on his face and ready to take on this next bump in the road.  He was so strong yesterday but I knew underneath every smile or joke this wasn’t where he wanted to be.  Resilient and courageous doesn’t even begin to describe our strong boy.

Yesterday Robert had neck, back, and leg X-rays, a Gait Lab test, a visit with our favorite nurse practitioner Colleen Ditro, and a CT with contrast.  So thankful all went well and no surprises were found pre-surgery.  We can take nothing for granted with Morquio and was very happy to see a stable neck, spine, and trachea. 🙏🏻

So, why are we here today?  Dr. Mackenzie has been keeping an eye on Robert’s knees over the past year and they’ve gradually become more knock kneed.  Robert had these 8 plates put in during his major hip/leg surgery in Kindergarten but they took them out 3 years ago once they had corrected the knock knees.  And, sometimes this happens with the progression of the disease or as the child grows, they have to go back into the growth plates to straighten the legs again.

While I don’t want to be in this waiting room right now, I’m so thankful Robert is in the best of hands.  The entire Nemours team and Dr. Mackenzie are simply the best.  Thank you for all of the texts, prayers, and love.  Keep them coming.  They get us through these hard days.  💜

(Below are some pics of our brave boy from yesterday and pre-op).