With a couple of surgeries on the table this summer, one to correct the turnout of his right leg and another to put his hip joints in a better position, Aleck’s surgeon ordered up a gait study at the Shirley Ryan Ability Lab. This way we could have all the information on how Aleck walks before making any final decisions and we are hoping that we will still be on track for a summer of surgery so that he can have all the time he needs to recover without falling behind in school or missing out on all the fun he’s been having this year. I mean, this kid loves school so much he chooses to go even when he’s sick and we practically had to nail his tush to his bed at the beginning of January so he wouldn’t be so kind as to share his germs with his classmates.
When we scheduled the gait study we were told to allow about 3 hours of time, so we came armed with snacks and ready to see what all was in store. The head research tech came out and explained to us that they would be using the same technology that major motion picture studios use in order to make Gal Gadot look like she’s really flying through mid-air, they were going to make him into a superhero. They had cameras all over the room that they used to film the way he walks back and forth over a certain area of the floor. Then they removed a part of tile and had him walking back and forth over a heat sensitive pad to gauge where on his feet he puts most of his pressure. Next came the hardest part, about an hour of measuring, bending, and testing his strength. It reminded me of how I had to hold him down all the time as a baby so they could take the same type of measurements, whispering calming phrases into his ear as they pushed his knees to the brink. We definitely didn’t realize he’d be going through all of this rigamarole, otherwise, we would have brought his IPad. Instead, we used our phones to look up Weird Al Yankovic videos watching for “Word Crimes” (sung to the tune of “Blurred Lines”) over and over again.
Finally, we got to the fun part. They put tiny microphones all over Aleck’s body, their placements corresponding to different groups of muscles, wired to what looked like a receiver from the 1970’s strapped to his back. There were small little bulbs all over him as well at certain points of movement, that looked like nothing special but lit up when you took a picture of them with your flash. With the main cord in his hand, the lead tech walked Aleck up and down, black and forth, over that same spot on the floor. It felt like teaching our old dog Sadie how to walk with us, I was waiting for the tech to shout “heel” and then throw him a milk bone for being such a good boy. Aleck did a great job and responded really well even though the gear was heavy for his little body. To watch our superhero in action click here.
When they felt they had gathered enough information he invited us over to the computer so we could see the computer-generated version of Aleck, all green and red and made up of little triangles walking back and forth. Unfortunately, we still have a few weeks before we’ll get the final results, and those will be presented to our team of surgeons who will then present to us their recommendations for surgery and/or treatments. But they were able to tell us a few things about the way Aleck walks, some we knew and some we didn’t, either way, the list of what’s wrong is long and we are bracing ourselves for what’s next.
One thing I didn’t realize was that Aleck walks toe-heel on his right foot but heel-toe on his left. It’s what gives his walk that very distinctive motion that allows us to pick him out of a crowd. I’ve been trying to copy it sometimes and it’s not easy. Now add to that how his pelvic bone is tilted downwards, now walk around like that you really can feel like our little guy. The last piece that we knew but we were soooooo hoping would just correct itself is that his right leg is shorter than his left leg. Not by a lot, but enough that if we really want to get his gait on the right track (pun intended) that’s probably going to be corrected as well.
The big questions right now are regarding his future treatment, is it only going to be these two surgeries or are we looking at more? How do we extend that leg and what do we do to correct the way his feet hit the floor? And of course the biggest question of all, what if we don’t do anything? I can almost hear the voices shouting, “he looks so good,” “he’s doing so well”, “he’s doing stairs now, I thought we were celebrating!” Well, we were celebrating and we’ll continue to celebrate every advancement in Aleck’s physical abilities but we have to think about the future. We can’t have 24-year-old Aleck in pain all the time, we don’t know how his gait will affect his bones and muscles in the long term. Even now he’s started to complain when he has to bend down a lot, I mean you would too if your right knee was poking way out to the side in order to pick your toys off the floor. He’s only recently become vocal about some of his pain and chances are, if he continues to walk the way he does now, that pain will only get worse.
But school is great, I mean really terrific. He’s so happy and he talks about school all the time. And we love our apartment, despite the banging radiators in the middle of the night that have forced me to check every room and window for intruders at 4:00 am, it’s so incredibly loud. And Craig got a job (cue fireworks, cue champaign, cue me jumping up and down with joy), a full time one with a direct deposit paycheck and benefits after 3.5 years of being employed by Aleck, LLC. So we should be doing a happy dance about 24-7, life is really good right now. We are going to enjoy it as much as possible right now. And when it’s time to sit down with our doctors we’ll tackle all of that then. I can’t tell if it’s harder to savor the moment when you know you’ve got quite a mountain of a shitstorm coming around the corner, or if I’m appreciating the wins right now because I’ve gotten a whiff of that storm and it ain’t roses baby. Either way, we will hold onto this moment as tightly as we can knowing that we are better off than we were this time last year to deal with everything and anything that’s coming down our pipeline.
