I have not had much to write about since returning from Washington with Nick and his Exo Sym. I don’t think either one of us is used to his leg not limiting him just yet. He has had a couple instances where his knee has hyper extended but Ryan says he needs to develop the muscles in his leg in order to control that because controlling it via the brace will interfere with every day activity. Nick and Chris will both be seeing Dr. Nichols in a few weeks so we will discuss it further with her then.
Other than the knee pain he’s had some soreness in his right thigh but I am pretty sure that’s the good kind… like his leg saying “hey you are using me so effectively that I am sore”.
This week we attended a meeting of the Scholars Gild which is part of the Arden Club. Here is what is was about:
“Everyday life activities with a physical disability can be difficult. The November Scholars Gild discussion will be lead by Dr. Michele Lobo, assistant professor in the Department of Physical Therapy at the University of Delaware. Dr. Lobo will discuss how advances in fashion/apparel studies, engineering, and rehabilitation can be used to design clothing that improves independence, function, and quality of life for people with disabilities, particularly for those with physical disabilities. She will highlight innovations from her Super Suits FUNctional Fashion and Wearable Technology Program at the University of Delaware. Those innovations range from lower-tech adaptive clothing designs through exoskeletal garments and smart garments that allow users to control gadgets in their environment.
Dr. Michele Lobo received her Masters in Physical Therapy from Hahnemann University and her Movement Science PhD from the University of Delaware. She has been a visiting researcher at The Free University, Amsterdam, and the University of California, Berkeley. Her research focuses on developing and testing early interventions and devices to maximize participation, play, and learning. Her NIH- and DOE-funded group has members from rehabilitation, developmental psychology, engineering, and fashion and recently developed the first exoskeletal garment for rehabilitation. Her current work includes a multi-site early intervention study and developing and testing a range of low- to high-tech clothing aimed at increasing independence and function.”
Interestingly Nick’s physical therapist Reenee was listed as a contributor. It is fun when worlds connect. What was also fun was Nick’s willingness to talk to the group about his Exo Sym and his experience. He never stops impressing me!
What also struck me about this talk was how awesome it is that there are people in the world so devoted to helping others achieve and get what they need. Dr. Lobo was quite impressive but her caring is what really touched me. We have encountered many people like this on Nick’s Fibular Hemimelia Journey and for that I am so grateful!
Maybe I will try to write about them now that there is much less to say about Nicholas. His leg works. He’s still Nick but Nick without limits. Once he absorbs this I might have some sort of activity post to share but truth be told I will be perfectly happy if he never does anything new with his leg other than live his life and walk though his days without pain. He’s more than his old leg or new leg or any leg or any part of him. We all are.
*** Special thanks to Steven Threefoot for letting me know about the Scholars Gild event! We live in a remarkable community and Steven represents the best of it for sure.
A while back I wrote a post in which I questioned whether no fibula was really no problem. I coined this phrase at a time when it really was not a problem for Nicholas. It was true. And then it wasn’t.
But now, see for yourself.
Nick also did this course holding a small orange cone in the air the entire time… ok not the entire time. When he needed to swing he put it in his mouth (gross yes but kinda kick ass if you ask me). He did it a couple other ways and did other exercises too. My boy was BEAT by the end of todays training however he was also so freaking happy. A shower, hydration and rest really restored him (per Jared’s instructions) and by evening he was feeling GREAT.
Then we took the ferry back to Seattle.
Tomorrow is our last day. It’s hard to believe but as Ryan said today this is actually the the beginning.
Keep on beginning and failing. Each time you fail, start all over again, and you will grow stronger until you have accomplished a purpose – not the one you began with perhaps, but one you’ll be glad to remember. -Anne Sullivan
This morning at Hanger Nick and I were feeling pretty cheerful. He was still sore from the previous days miracle work but he was ready for more and he was excited to receive the knee portion of his ExoSym.
By the end of the morning he did this:
And I think it speaks for itself. It wasn’t easy. He’s feeling sore but he’s aware of the difference between soreness and pain. He’s found the sweet spot as he calls for using the ExoSym effectively when stepping.
I really want to thank every person at Hanger for making this possible. I love that Nick gets to work out in a gym with others with the device. I am in awe of everyone there and in awe of the brace itself. It is, in the words of Beth, exosymply amazing!!
Back at Hanger. I am in the lobby and Nick is in the gym. I don’t want to follow him around all day and I want to get some work done. He’s in the thick of his Miracle Work.
You might wonder what I mean by miracle work. Well for one I think the miracle is that there is something that will work. That someone (Ryan) created it. The miracle is being here having access to this device. Limb salvage isn’t new, though it is becoming more common. What happens after the salvage is less studied and deserves much more research.
Most of what I will share I learned form Ryan and Jared yesterday. When I described the ExoSym as like Nick getting a prosthetic without having to lose his leg, I really had no idea how right I was. The ExoSym will bypass the part of Nicks leg that does not work. While this is a bypass, it is not a shortcut. This means the rest of Nick’s body will have to work harder to accommodate it. The brace itself will help some without putting in the work but it wont be a Miracle, and it would cause Nick to suffer in the long term if he tried to let the brace do the job alone. The Miracle Work must be done in order to avoid this and get the best result. It is already helping but the full effect will take about six months of work.
Nick started yesterday with some exercises that showed him how to engage the muscles he will need to work to have his miracle. Here is a video:
This work and the information shared reminded of Reenee letting Nick know that he is the master of his universe. He is the one who will make this miracle work. He’s not opposed to, nor deterred by the work one bit. Me, I am exhausted watching him but so proud. So exceptionally proud and so grateful to be here getting him what he needs.
So it seems Nick needs to ease back into full activity. He’s had some pain since beginning to fully weight bear. I checked in with Allison and this is normal. Knowing that Allison said it’s ok seems to have put Nick’s mind at ease. He remembers the third lengthening’s drama and worried about his bone collapsing. Even though that lengthening ended traumatically with him breaking his arm and his leg crashing too it was still super successful. Dr. Standard was abel to save his 6cm and make his leg even straighter than it had been.
In addition to finding out that Nicholas could bear weight on Monday, we also found out that he needs another 8 plate, this one in his femur. We are hoping it can wait till the PRECICE rod comes out but it might need to be sooner. His leg just wants to kick out to the side… again and again and again. If it has to be it’s own surgery so be it.
Above you can see Nicholas’s amazing new bone! He needs to focus on hip strengthening exercises pt wise and Dr. Standard also prescribed gait training so I think we need to have a session at the RIAO so Steven can learn what to do or go back to formal therapy close to home. Nick did well at duPont previously. We will work it out.
Of course I am resisting stressing this leg pain myself although I can’t help but feel like I wont be fully at ease till he is walking pain free. I have to knock that thought out. This is a process and I have to let it be what it is. A friend shared the wonderful quote below yesterday and I am trying to let there be room for whatever feelings are present. To acknowledge them and not try to knock the out, but also not stress them. That’s a process too! I also shared this in the support group and it resonated with others as well. Thanks Scott!
“We think that the point is to pass the test or overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy. (10)”
― Pema Chödrön, When Things Fall Apart: Heartfelt Advice for Hard Times
So if my memory is correct Nicholas has lengthened 4.2cm’s. The gap is pretty easy to see! He’s near the finish line, though there was a moment of confusion about what the finish line actually is. I think it’s 5cm. Dr. Standards PA thought even legs. We will just go back Monday and get new measurements and go from there.
I got to ask my question about the 8 plate not fixing Nick’s valgus and Chris basically said there are a few ways to fix it but there is time. I am choosing to let that worry go until I can chat with Dr. Standard about it in depth, some time down the road. For now things are going so well, why not focus on that.
Nicholas also had physical therapy to check in on how we are doing at home and the therapist was most impressed. His knee is at 95 degrees. Hip was a little tight but overall all is well and we don’t even necessarily have to go back as long as things keep going well. I think Steven should switch careers and become a physical therapist. He’s doing great, although he credits Nick. PT for lengthening is not an easy thing and it is vital. Mostly I would never suggest families do as we have done but we have and it was certainly harder when Nick was younger. DIY therapy is not for most people and if Nick had not continually improved his ROM we would have absolutely gone back to the pros more regularly.
So maybe one week left of lengthening, maybe Nick will go back to school next Tuesday. Maybe we can get to 5cm complication free… fingers crossed, thoughts and prayers requested, the finish line is near!