The Next Adventure Awaits...

It is no surprise that Carson's legs and feet aren't typical. He has arthrogryposis (a condition of contractures in various joints) and has always had issues with in-toeing (what is typically known as being "pigeon toed"). Unfortunately, over the past month or so, I have noticed that Carson's condition -- which has been painless up to now -- is causing pain for him. Severe, unremitting pain. Pain that makes it difficult for him to walk. And the in-toeing (which is caused by a condition called tibial torsion) is significantly worse on the left leg.

I made an appointment this week with his orthopedic surgeon who, up until now, has simply monitored Carson's condition. When we got to the appointment today, I was under the impression that Carson's pain was in his ankles. During the exam, it was discovered that he has right foot pain at a specific point by his pinkie toe. Extreme point tenderness. Then he admitted he had smashed it in a door over the weekend. Why didn't he tell me? Because I was busy doing my homework. (Thanks for the guilt trip, buddy.)

Apparently, that foot smash resulted in a hairline fracture. That hairline fracture resulted in this...
...atrocious boot. He will wear it for a few weeks and then the surgeon will recheck it. As for the left leg (the area where he has been complaining of pain the past few weeks)...well, that is a bit larger of a problem.

His tibial torsion (where the left lower leg bones are twisting inward as he grows) is becoming severe and the surgeon thinks that is causing the pain. I think that as well, so I wasn't surprised to hear that. The surgery to fix it would require breaking the bones of his lower leg and basically removing his foot and putting it back on his leg straight, complete with screws and metal plates.

Yikes.

We started talking scheduling and recovery timeframes...but then the surgeon backed off. I have known this surgeon for years (worked with him a lot when I was a staff nurse at Children's Hospital) and respect his conservative nature. But, for some reason, that conservative nature set me off today.

The surgeon started saying that maybe we could wait. This doesn't have to be done now. I went from being hopeful that Carson had a solution looming to tearful with this sudden wishy-washy behavior on the part of the surgeon. The surgeon told us to make an appointment for a recheck of the hairline fracture in a few weeks and then he left.

The nurse turned around to look at me and shut the door so she and I could talk. As soon as she shut the door, I started crying. I tried not to -- I certainly didn't want to scare Carson -- but I was just so frustrated. The nurse listened to my concerns and told me she suspects the surgeon wants me to push for the surgery, rather than him forcing it on us. The nurse agreed that Carson definitely needs the surgery...and he needs it sooner than later. She told me he is at the perfect age to recover quickly and well. And she encouraged me to advocate for my son at the next appointment.

I worried about being seen as "one of those moms." You know the type...always pushing for more procedures, wanting extra attention because their kid is sick or injured. But if you saw Carson struggle to walk every morning, you would agree with me that he needs help. The nurse certainly agreed.

So, we go back to see the surgeon in a few weeks, at which time we are going to set a date for surgery -- probably in February. Because of Carson's low muscle tone in his arms, he could never walk on crutches, so he will be wheelchair-bound for 6-8 weeks as he recovers.

Life is about to get really, really complicated. But it will be entirely worth it if it helps my Little Man.
And I'm fairly certain, during Carson's recovery, a certain humongous dog will be right there to keep him company...