Foot Prints On My Mind

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.

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.

“I love being a guinea pig.” Nick

Nicholas was excited to get his replacement brace today. It is made of carbon fiber like the last one and this time thicker! It gives him some push off which makes up for the lack of mobility in his ankle. Nick’s ankle is stable but stiff, which is a common outcome for some people with fibular hemimelia. He didn’t have much motion to begin with so he hasn’t lost any through his surgeries but now with the brace he has a little spring in his step which functionally can make a big difference.

His insert has a lift, cushioning and a shoe filler so he can wear a bigger size. Even with the filler his shoes are a few sizes off. We may get him a bigger filler next time and next time his insert will be attached to the new brace. I am still wrapping my head aroudn this whole thing and hope to post more soon about the technology and reasoning behind the brace. Today getting Nick and Bess to Baltimore and back zapped most of my energy and there is a web chat with the RIAO docs tonight that I don’t want to miss.

As I have posted before Nick can run and do everything he wants without the brace but he says he is faster with it, and I am really hoping it helps preserve his joints in the long run. With my boy just about my height, I really cant help thinking of the future pretty often. We need to do everything we can to keep his leg working as well as it has for him.

Today we also got to see some familiar RIAO friends and meet two new RIAO families. I am always excited for anyone to meet Nick who has a little one with a limb difference so they can see how well he is doing. I just hope that meeting him and chatting helps them feel that everything will be ok. I am not sure if I am able to convery that in the moment. I wish I had believed it way back when.

Update: Here is the more technical description I could not muster. This came care of Dr. Standard on tonights web chat. “Jen- the shoe prosthesis helps with several aspects- gives better dynamic push off, fills the shoe for same size for older kids, allow for more high velocity activities”.