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!
There it is!I It truly amazes me. The PRECICE rod looks massive in Nick’s femur. This is the first I have seen of it. Steven told Chris he was not allowed to come home without evidence so he took a photo and sent it to Steven who finally sent it to me. I have been waiting all day for this. Thank you Chris!!!!
Overall things are going well. We can continue to do pt on our own but Nick has to start bending more. He is at 43 degrees and if he gets under 40, and remains there, lengthening will have to stop. We are actually moving to 4x per day lengthening instead of 3 though I have to wonder if that might not be prudent considering this knee business. Since I was not at the appointment I don’t know if my logic makes sense. I have to talk to Steven about it when he comes home. 4x per day would mean Nick will be done lengthening in 33 days. That would be amazing but I don’t want to push and make things harder for him. I just want him to get his 5cm safely and with as little pain as possible.
Nick was supposed to get a new brace that would help with extension but since extending is perfectly fine we are holding off on that but they are bringing home the new version of the magnet! I think it will be easier for me to lift with one hand.
That’s about all I know. I am so relieved to see that amazing space where new bone is growing. I hope Nick was happy too. 1.5cm down 3.5cm to go.
TBH… to be honest. I am usually quite easily honest so I do not use this acronym much. But today I need to.
TBH Nick is feeling down today. I know it will pass. I reminded him of this and of how “normal” it is to feel this way but in the moment it does not make it easier for him necessarily.
Sometimes things are hard for me too. I posted on my personal Facebook page yesterday that things are hard because they are, but that we are not letting it get us down, which we generally are not.
But it is hard. Nick had a big surgery. He has a rod in his leg and we will use a magnet to lengthen it 3x per day for the next 60 something days! That’s kinda crazy. He will not be full weight bearing till maybe August. Maybe. Thats a big deal. He is still on round the clock pain meds. Thankfully at a lower dose but that means more frequent doses so we are waking up at night more. I’ve also added doing laps around the house to his home physical therapy because his leg is really weak. This is normal (I got to ask Dr. Herzenberg about that on the web chat last night. He’s not Nick’s doc but he is brilliant, kind, pretty funny and a fibular hemimeila expert like Dr. Standard). I want to be doing everything we can to help Nicholas gain strength. He is feeling bored and frustrated today at not being able to move his leg. He’s not in the mood to talk about it. He feels like doing whatever it is he can’t do. His emotional health through all this requires attention too and sometimes he just needs space. I get that.
TBH this lengthening will be harder than the others in an important way. Yes it is not an external fixator and yes we are so flipping grateful for that but seriously. Seriously, that does not mean this will be easy. Easier in some ways, yes, but not all ways. This is a femur lengthening which Nick has never done before. Nick’s hip and knee will not like this lengthening. They will want to contract and he will have to work so hard to keep them from doing that. There will be pain. Growing two inches or so in 67 days will do that. We will do everything we can to manage it but that does not mean this is easy.
We are positive people. We are super grateful not to have pin sites. We are super grateful that everything has gone as well as it has. However we still need to be able to say this is hard. I need to be able to say it. Hard does not mean something is wrong. Hard does not even mean bad.
TBH I think we rock the hard times like it’s nobody’s business. I will never forget that. Nicholas has come so far. This journey has strengthened us all. We know how precious every day existence doing what you want is. Every day existence is precious in and of itself of course!!!
There are a multitude of reasons why some people can not live each day doing what they want. Many are far harder seeming than fibular hemimelia. Some things can be overcome and some cannot. Some people keep going even without a light at the end of the tunnel or without the light at the end that they might have originally hoped for. They can become the light.
If fibular hemiemila is the hardest thing Nicholas ever has to go through I would still count him a very fortunate person! I know I am a amazingly fortunate mom. Part of me will always want to make things easier for him but you can’t take away the hard stuff without taking away the light too. TBH I would never want to do that.
There he goes. Literally rolling along. While Nick is self propelling I am pulling around the large case that contains his remote for lengthening. Calling it a remote makes it sound small. It is not.
Today we started lengthening. Although Nick did get a few mm’s during surgery this is the official start from our end. Nurse Lee delivered the device (which ended up being the old version and not the new… long story) and helped with the first go. I have a really cute photos of the moment but since Nick is in his boxers I wont be sharing it here. Nurse Lee is really one of unsung hero’s of the last decade of our lives. Seriously. I have written about her before but not enough. She has been there for all of Nick’s lengthening’s. In general she teaches parents how to care for their kids in an external fixator and lengthen their limbs. Now also teaches parents how to use a big magnet to lengthen limbs. It’s no small thing to train us to take our kids home and do these things to them. Plus she runs the web chats which have helped families in immeasurable ways.
Nurse Lee is a person I have counted on probably more than should and certainly beyond her job description. I respect and admire her so much! Now back to Nick…. sort of…
Today was doctor appreciation day but we did not actually see the doctor. We saw Chris the PA. With Nick’s third lengthening and monster fixator I was not ok with him not seeing Dr. Standard and frankly neither was he (triple negative… shut up grammar police). It seems we have both grown a lot since then. Today’s appointment with Chris went great. He answered all of our questions and concerns. Right away I asked him about the swelling in Nick’s knee which he said was ok. Nick’s other incisions all looked good. We laughed a little and really had a standard appointment… even without Standard 😉
Our clinic visits will be a crazy lot shorter if we see Chris or Allison. As long as Nick does not ask for Dr. Standard I have decided that I will not. I trust Chris and Allison with Nick’s care. We love seeing Dr. Standard but if things are going smoothly we don’t need to see him. I have talked to another family that does their appointments this way. Nicholas used to ask for Dr. Standard as soon as we walked off the elevator at the RIAO. Times are changing.
So all in all it was a good day in Baltimore. The valet service was a godsend, as it has been in the past. The gentleman who helped us today has been there as long as we have been using the service, which was a comfort. Little details can really make the day easier. Nicks physical therapy evaluation went well. His eight plate is going to make the knee bending harder but it’s really ok. Extending is the focus now and we will keep working on the bending. Since pin care was usually my job and pt was Stevens I might take on some PT. Femoral lengthening requires more work so I think it makes sense to take some on, if Nick will let me. He’s pretty particular about who does what. He jokes that I am out of job without pin sites. Imagine that.