Pain in the Ass

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.

For now: Happy Halloween!


Phase One Done

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!

The Case for the Brace

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.

This is happening.