Surgery #6

I remember when Robert was diagnosed talking to a Mom who was telling me how many surgeries their daughter had gone through with Morquio and I was completely terrified of what was to come for Robert. And here we are, 8 years old, 6 surgeries. Sure, some are MUCH bigger than others. But, surgery is surgery.

Next week marks 2 years since Robert’s major hip/knee/ankle surgery – that’s not the technical medical term for the surgery but it was the one we all remember that put Robert in a spica cast for 6 weeks and over a year of PT to learn how to walk again. The best news is that two years later Robert walks pain-free with straight legs. While he may not walk like your average 8-year-old, being able to walk with the occasional use of a balance bike is amazing. And we are so thankful for the Dr. Mackenzie team that made it all possible.

The not so exciting news is that 2 years post-surgery is when the hip hardware all comes out. Much like the knee hardware that was removed last year. So, here we are, hardware will come out tomorrow. While a giant step forward from where we were a couple of years ago, it will be a few steps backwards for Robert for the next 6 weeks. He’ll be hesitant to walk again, go back to PT, and no running, jumping, PE or recess for a while.

It’s a surreal feeling walking into Nemours Hospital in Wilmington, Delaware. So many hard memories. It’s been quite a road since our first meeting with Dr. Mackenzie in 2018. Robert walked into the hospital today and in his typical funny self said with air quotes “happy times, happy times.” But he also immediately lit up in a smile when he spotted Dr. Mackenzie’s photo on the wall. While hard — we all know we are just where we are meant to be.

Robert did great in the Gait Lab today – the last time he did this was just before his leg surgery. They are comparing his gait pre and post-surgery. The technology they use is pretty amazing and he had some fun with it again dancing at the end while his “video game character” moved on the screen. Next he had x-rays and we had one final look at that hip hardware before it is removed tomorrow.

We topped off the pre-op day with a fun visit to Dr. Tomatsu’s Morquio research lab. It was our first in-person visit and our future little scientist LOVED it! A hopeful way to wrap up the day seeing where a portion of the Rooting for Robert dollars are being put to work. So incredibly thankful.

Well … that’s it for now. It’s time to take Robert for a filet … the way to this boy’s heart. Trying to make up for a surgery on Valentine’s Day.

Thank you for all of the love and prayers and I’ll post an update after surgery tomorrow.