Seventy-one days. HG has been on this earth for 71 days, and for 57 of those days, he has had casts on his legs.
After 57 days, I’ve been able to change my son’s diaper while holding both of his bare feet in my hand.
It’s crazy to think we’re here already, but we are. HG is officially out of his casts and is now sporting his carbon-fiber patterned AFOs.
Ankle-foot orthosis (AFO) is HG’s new orthotic braces that will help stabilize his ankles and feet to keep them in a natural position. He is meant to wear them 23 hours a day, as part of the next step in helping him develop his legs and feet hoping to allow him to stand one day.
It was all an exciting and whirlwind return to the Greenville Shriners, with a 6-hour visit, that was topped off with new AFOs, new splints, a new orthosis to sleep in, and I finally got to go in too!
This was my first opportunity to go in for the Shriner’s appointment, and I don’t know what I was expecting, but I was amazed by the end. There was no playing around in that place. It felt like we never stopped. From going to the casting room to x-ray to orthopedics to occupational therapy and then physical therapy, back to orthopedics. We never stopped!
So, with this being my first time being around these doctors in person, I naturally paid attention. I was comparing to the vibes and the treatment we had received weeks prior, and well; I knew it was night and day, but I didn’t realize just how night and day it was. Were we swept from one to the other? Yes, absolutely. That visit was a marathon from the onset. The thing about it though, was not once, not ever, did it feel like HG was just another kid. Another patient. From the casting technicians to Doctor Hyer, to Phil, our orthotist (who was AWESOME!), and the therapists. Every single person we interacted with felt like they were in that moment, completely focused on our son. He wasn’t just another AMC patient that they treated like all AMC patients. They were treating our son, as he is; his own individual case, that requires attention.
When we left, I was exhausted beyond words but walked away, so much more satisfied with our decision than I already had been. In less than 75 days our baby boy has gone from a twisted, pretzel of a baby, to a baby boy that is kicking his legs, bending his knees, and doing things I never allowed myself to believe was possible.
The tenotomy clearly did the trick in a lot of ways. HG’s feet still have a little way to go, and the AFOs should help with that, but they’re a long way from where they first started. It’s crazy!
We’re still dealing with the right hip dislocation, and we’re a few more months away from treating that with surgery. It’s clear that HG’s tendencies are going to be to “fold back” to how his legs were before, now that they’re free of casts. The left leg stays pretty straight and looks great considering. Old righty though wants to tuck back in behind the left leg. That, along with a very slight bow in HG’s femur, lead us to Shriners creating a custom device made for HG to sleep in, that keeps his right leg straight.
I am amazed and purely fascinated with what they’re able to do! Around lunchtime, I’m pointing out how his right leg wants to tuck back up under his left, and by the time we’re leaving, we have a custom device made on the fly and made to fit HG. In another life that’s something I would be so incredibly intrigued by and could see myself doing. It was awesome to watch the process from measurements and rudimentary drawing to a fully fabricated device.
The visit wasn’t just all about below the waist, though. We (finally) had some new splints made up for the ole hands and wrists. Arm movement is slowly increasing on the smallest of scale, but it is increasing, so I was happy to have new splints. These were made with the intention of wrist position and inflection, but giving the freedom to have finger and thumb movement if HG ever starts adding those to his repertoire.
So, for me, we’re officially into the next phase of all of this. We’ve gotten through the initial cast phase, which at the time was difficult, but may prove to be one of our smaller hills to climb when this is all said and done. This next phase we’re in requires more diligence from us. The added obligation does come with some rewards: we finally can give our baby boy a bath. Bath time can now be a thing! We get to start working with our kicking, PT and OT can start working on his legs too. Plus, HG can finally start to sit up a bit more! The way the casts were made it difficult to really sit him up. Now that he’s in his AFOs, our baby boy has more freedom to sit up comfortably.
Seventy-one days after our baby boy was born, we’ve reached a point where I feel like I can finally sit and take just a moment to breathe. Seventy-one days of warmup laps getting ready for this next phase in all of this. It’s insane to me the changes that have been made in seventy-one days. Let’s see what things look like in seventy-one more!