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.
Nicholas and I are back in Washington. We arrived last night and according to him had a bit of a harrowing drive from the airport to our dear friends home in the rain. I guess he’s not too wrong. Driving in the dark, in less than familiar surroundings, is a little hard for me. Add rain and… harrowing? Maybe so.
The rest of our journey was easy peasy. Lots of time for chatting and reflection. While going through security at JFK to pass the time I asked Nick if he had his ExoSym already and he could go anywhere where would he want to go and he said “home” and I asked “why” and he said “to take a nap”. So we have established that he was tired.
So I amended my question and said the nap would come first at any destination and he still said “home”. And now I was frustrated.
Me: “You’ve got to be kidding me”
Nick: “I want to go home, nap and go for a walk in the Arden Woods.”
Ahhh… this make sense to me. Something he can’t really do now or at least not do comfortably. This I get and this touched my heart. I want to do the same exact thing when we get home.
Today he started using his ExoSym and it was a pain in the ass… Yes a pain in the ass and that seemed like good news to me right away. Nick was using some muscles much more than he had before. The brace and the process are both simpler and more complex than I thought. I don’t have the brain power left to share all we learned today but I will. I promise. For now just know that while it was a pain in the ass it was not a pain anywhere else and Nick is doing remarkably well with his functional training which will go on for quite some time. He wont experience the full effect of the device for possibly 6 months. There will be a lot of work involved. I call it Miracle Work and I will elaborate next time.
A few weeks ago Nicholas had a gait analysis at A.I. duPont. It was actually a pretty fun Friday for him and his siblings. I can’t share pics because Nick in short shorts is not meant for the internet but the whole thing was so interesting. I suggested they rent the place out for parties. The gentleman who did the study let the sibs try out some fun stuff. I never think going anywhere in a hospital with four children will be easy but it was easy and funny and pretty painless for Nick except he lost some hair getting sticky things taken off after. All the circles on the figure above represent a sticky thing. It all comes back to bandages and tape. #whatFHmomsknow
The image above was given to us on our way out. The complete results of the study take weeks. I so love science and data and as impressed as I was with the whole thing I was not so happy to see this image.
Nick is still bearing weight primarily in the same place he did before he had 3 screws put in his foot.
This study was done after we went to Gig Harbor to get Nicholas fitted for the ExoSym. I am glad we had done so already because I feel this points to the fact that we need non surgical solutions now. The surgical ones just are not cutting it, despite a lot of cutting! Ha! Nick found that quite funny.
I am trying to take the insurance bit of the ExoSym process in stride. Cigna has not completed a preauthorization yet and may not ever. We just have to go and see what happens. This is potentially super nerve wracking as this brace will cost over $10,000. It’s really not just a brace though. It’s Nick having a prosthetic and keeping his foot. It also has a knee component that will be vital. I am understanding this issues Nick’s knee has more and more as Nick works with Reenee his physical therapist extraordinaire.
Yet again I find myself in a situation in which I have had to commit not to let money decide my sons fate. I really wont. It’s not fair to him. On Halloween my boy will get his ExoSym and he will create a whole new set of foot prints and follow the trail blazed by Zak Green and hopefully many kids with fibular hemimelia to come.
We are on the return journey. Delaware here we come. Here’s a bit of what we did in Washington:
But wait. We came for a reason. It wasn’t poke hunting. It wasn’t lunch on Gig Harbor. It wasn’t the wonderful time we had with our Seattle friends and kind hosts!
We really had a wonderful trip but the wonder is not why we were here. Here is why we were here:
On Monday Ryan casted Nick to make a mold of Nick’s leg and foot. Just meeting Ryan Blanck was pretty cool. It was maybe 4 years ago that I read about him and the IDEO. I didn’t imagine that Nick would be getting the device at age 13! When I first read about it I thought he would need it as an adult. I am so grateful it is available to civilians now!!!
We also had the chance to tour Hanger and it was amazing. Everything is made on site. It is remarkable. The gym is the center of the facility and there were people working out with prosthetics and ExoSym’s. It was so cool to see people using the device! Just being there and feeling all the hope that had been building and realizing Nick will have this device was emotional for me and Nick talking about his hopes for the ExoSym made me emotional as well. He is so ready to not have his leg limiting him!
I also met Pam and Koreen who I had been emailing with for the last two months or so and to realize that they are the office staff and doing everything themselves, was humbling and made me wish I had been more patient and I said so.
Trying the test device on Tuesday was an interesting process. As Nick stood and walked Ryan made adjustments until Nick was pain free when walking. This test device worked at only 40% of what the actual ExoSym will and already Nick felt a huge difference. The while process was quite technological and it was fun to see Ryan thinking and working things out, trying this and that and watching Nick move and understanding the way Nick’s leg currently works and what it will be able to do once he has the device.
I am feeling super sleepy now so this post will likely get an edit or two eventually. I just can’t fully express how grateful I am for this entire experience. I am so grateful that Nick will get this device. The insurance part is not worked out yet but it will be. I feel so sure of that. I am beyond grateful to Jen and her family for welcoming us into their home. It made it feel like a very different trip I am sure. It was wonderful to have someone to go home to and connect with. Jen’s presence was such a comfort to me and added another level of enjoyment to the trip.
Sleepy me is just basking in the gratitude as Nick fights for a Pokemon gym. Just another success to add to our list from our amazing SEA GIG adventure!
So Jen from Cigna helped the case for the brace move up to Tina from Cigna who will bring it up to Dawn and after Dawn it’s just Amtrak left to work on…. This sounds confounding but it is progress!
The reason at the moment for all this is that the code for the brace ends in 999. 999 means miscellaneous and any 999 code over $500 must go through higher levels for approval and have additional supporting documentation.
It does seem fairly reasonable to want documentation before shelling out over $10,000. I did point out to Tina that this is way less than the cost of another surgery. $10,000 would not even likely cover one day’s hospital stay post op.
In the mean time while we wait for approval Nick and I are going to Hanger! We fly into Seattle on Sunday, visit Hanger Monday and Tuesday and fly home after midnight. This trip is just for Nick to get fitted. This is the first step and we will have to fly back and stay for a week when the brace is created but this gives insurance more time to authorize it and Nick is just dying to get moving on this.
We are blessed beyond measure to be welcomed by a friend in Seattle. Remember how I wrote that Jen’s are awesome… Well of course her name is Jen! I have only met her in person one time but she is one of the kindest souls and I really can’t express how grateful I feel. It reminds me that we have support and things work out.
I owe you all an update on Nicholas and our ExoSym mission. The paper work has been submitted. His case manager from our insurance company now check’s in with me weekly to see if there is any progress. This week she said:
“Please don’t stop reaching out to me. You don’t have to fight for this. I will do that for you.”
Did I mention her name is Jen? Jen’s are fucking awesome.
These are words I never ever expected to hear from our insurance company. Really, you will fight to get your company to pay for this expensive brace for my son? Thank you. God bless you. You are my new BFF. Sorry old BFF’s. Jen at Cigna is a my girl now. Sorry Steven I am leaving you for Jen from Cigna. She hasn’t actually done anything yet but I love her because she is on our side.
Speaking of women on our side. I took Nicholas to a new doctor about a week ago although this doctor is not new to us. I have known, respected and admired her for years. Her name is Dr. Reid Nichols and she is at AI duPont… basically in our back yard! She’s treated complex limb deformities for years including fibular hemimelia and at least one of her patients is part of our FH family. She’s brilliant and thinks outside the box. She will do whatever it takes. She treats all kinds of conditions so I feel like she has a really broad knowledge base as well. She is a kick ass doctor.
While we were at AI we also had Nick’s brace adjusted and met with an amazing gal from PT and who made some suggestions for the brace adjustment that blew me away. Dr. Nichols also had real time solutions for some of Nick’s issues. A small thing from the pharmacy for toe pain. Kinesio tape for his knee. The whole AI experience was awesome. To be fair I know AI. I am on the Family Advisory Council and spent some time as the parent rep on the Ethics Committee. I already loved the place and I felt totally confident in Dr. Nichols and I believe Nick did too.
I can not wait to get my boy to Washington to Hanger! I am so grateful to Dr. Nichols for being on our team. She always has been really but now she is in the trenches with us! She has actually met someone who has the ExoSym and connected with the creator of the brace. She is going to apply her whatever it takes motto to my kids situation and in turn I will do whatever it takes to make sure this brace gets to more kids who need it. My mission does not end with my son, though it surely beings there and is my current focus and forever first focus!
This mission is possible. This brace finally feels within reach for Nicholas. Hopefully my next update will include a date for our trip to Hanger.