Moving Forward

WE. ARE. DONE. TURNING.

Big news from our house….we are done with fixator turnings. When we started this Dr. Kogan told us that this process goes until the kid and parents can’t take it anymore, and that we would know when we reached that point. We are all in agreement that we reached that point last week and we kept pushing on…but enough is enough. We are done and I have never felt so at peace with a decision in my life. I talked with Jack this morning and told him we can stop whenever he wants. He said, “we can’t stop, we haven’t gotten to 6 cm yet.” I told him that we want to stop when he feels like his body is telling him it’s time. You could see the relief on his face as he said, “I can’t take it anymore mommy. I am done, I want to stop.” Our goal started out at 3 cm, and each once we reached 3, it became 4....4 became 5...and so on. His body just can't do the full 6 cm. Medicine is a science, but not an exact science. This is more than a fixator, xrays, and orthotics, we need to remember that there is something far more important than any of that...a person, a 6 year old kid, that just can't take it anymore. We're making this decision solely based on Jack and his emotional health. He feels great about the decision and we do too!

So, that’s that. If you look back to my first post, our goal was 3 cm. Today, with fixator turnings we made it to 5 cm….adding in the 5-7 mm from the surgery we are around 5.5 cm of growth. Jon and I didn’t dare dream we’d ever make it past 5 cm. When Jack was in the OR, Dr. Kogan called to tell us that she had to put the small struts on and the struts would need to be changed sometime between 3 and 4 cm. I remember Jon and I looking at each other and thinking we weren’t going to let ourselves imagine getting that much growth, we weren’t going to get our hopes up to make it past 3 cm.

So, yeah…..5.5 cm feels pretty damn good!


BEFORE




AFTER




BEFORE




AFTER

I've been by his side every moment of this, I've seen every turning along the way....and my jaw still drops when I see those pictures side by side. Absolutely amazing!

Jon called Dr. Kogan this morning. As far as stopping the turnings, she left that completely up to us. He is our child, we are in charge of making his decisions and I’m grateful that she left it up to us. I think she knows that we’re in a far better position to make this decision than she is. As far as addressing the foot (plantar flexion) and knee (slight knee contracture) issues, she has a few ideas. Her first thought is botox injections. We’re not thrilled with that thought…we tried botox once before with zero results for Jack. It’s expensive (insurance does not cover it) and it’s VERY painful…I can’t even imagine him enduring an injection into those rock-hard-over-stretched muscles. Her other thoughts are surgical lengthenings of the hamstring and Achilles tendon. Obviously we are disappointed to think of having 2 more surgeries, but we’re more apt to go that route than the botox. I talked with all 3 of his PT’s today and they were all very encouraging, urging us to not do anything yet. They really think with time they can get both the hamstring and Achilles to loosen up. They had the same thoughts (and hopes) that we do…now that we are done lengthening the bone, the muscles/tendons/ligaments will catch up in their growth too.

The PT’s main concern is his hip. He now hikes his hip up really high to keep his foot way off the ground. It’s really quite fascinating actually….his brain and body are used to having that foot at a certain distance off the ground, now that the leg is lengthened his body has accommodated this need to keep the foot up that distance by him walking with his hip hiked way up. If you look at him while he’s standing, his foot is still 8 cm off the ground…what it was before the lengthening! So, the PT’s are going to have to teach his brain and body that that foot belongs on the ground…..after that we can work on him teaching how to walk, run, kick, etc etc. It’s going to take a long time, we have realized that…but I think it will be a fascinating process to watch.
He has made progress with putting pressure on his foot. He loves playing in the rice and sand with his feet, leading the therapists to believe that his sensory issues are actually anxiety rather than actual sensory problems. For now, his anxiety (and very understandable anxiety) issues are our biggest hurdle. We’re slowly making progress, here he is putting a good amount of weight on his leg.

So today is a good day. Our mantra is “baby steps, baby steps” (no pun intended). I think today is the best we’ve felt in weeks, it’s nice to be moving forward. I asked Jack how he was feeling today and this was his response, I think that’s a good sign.

I can't wait to celebrate tonight...with excessive amounts of ice cream!!!!