Be the advocate

To say I'm frustrated is an understatement. A week ago, I spent over three hours on the phone with Scheck and Siress, Shriners and insurance. We've had one appointment at Shriner's and several at Scheck and Siress, this means that I've driven to Chicago and back at least four times for appointments. I'm lucky that I've been able to work these appointments around my work schedule and that I have days off during the week.

According to many parents in our support group at Camp No Limits, Scheck and Siress should have kicked the prosthetic bill back to Shriners. That didn't happen. Parents told me to talk to them both. When I got home from CNL that's when the calling began. Endless messages, calls, return calls, follow ups, more calls, more time, what felt like a lot of wasted time going around in a circle. My head was spinning and I felt defeated.

When we went to Shriners, we were not told that we would be referred out to someone else (in our case Scheck and Siress) to complete the prosthetic. As far as Shriners was concerned, they were done with us until we followed up after her final fitting. As far as Scheck and Siress goes, they made a product and wanted to be paid. I felt deceived. If we would have gone to her pediatrician here, she could have done the same thing the physician at Shriners did... wrote a prescription for a prosthetic due to her missing her left hand, a congenital anomaly. Instead, we drove 6 hours round trip for them to do it and then send us somewhere else. We could have brought the prescription back home to a prosthetic company that was closer. Instead, Shriners told us to follow the Scheck and Siress rep that was IN our appointment.

Please understand, I'm not bashing either. I'm simply telling you our story and our situation so that other parents in our situation can understand. I hope that this helps others to not be in the situation that we've been in recently. I hope that it can help one family to understand the process a bit better. It's not an easy one. I hope that I can help just one person have a process that's a bit easier than ours.

We are happy with the prosthetic that was created for Bella and it is serving our purpose. Our prosthetist at Scheck and Siress really worked to create a prosthetic that would work for Bella. He was nice and easy to work with. He listened to our thoughts and concerns and hers as well.

We are happy with the physician at Shriners. He didn't do anything "wrong". He simply gave us a prescription and wrote his notes in a way that allowed insurance to see the value of a prosthetic for Bella. This helped us and her to receive her prosthetic.

In the end, this has left us with about $850 out of pocket to Scheck and Siress.

Where does the round robin come in? It comes in because Shriners SHOULD have covered the cost IF they have POPS in their hospital (POPS is the prosthetic, orthotic, place there). Shriners in Chicago recently had POPS fully up and running... one month after our initial appointment. Why didn't they tell us this when we scheduled? "Hey if you wait a month, we can make her prosthetic right here in house and you'll save a ton of money"... it's too bad that conversation never occurred.

What are we finding out? We are finding out that FUTURE prosthetics will be covered IF they are made AT SHRINER'S. We are also finding out that not all Shriner's run the same. They are all different and they don't seem to streamline the process from one location to another.

I spent another hour on the phone just this week, advocating for us and for Bella. They are taking our situation up to the head of the hospital at Shriner's Chicago to see if there's anything they can do to help us financially with the cost of her prosthetic. Each day we live and we learn. In the past few months, I've learned that I will advocate for Bella's needs to the ends of the earth. I will continue to fight for her needs, even if that means exhaustion on my end. Today, I'm mentally and emotionally exhausted. My fight for her doesn't end today. I won't back down, I will continue to be there for her and be her voice!

Round Robin

Today, I spent three hours on the phone with Scheck and Siress and Shriners. Three hours of my life that I'll never get back but I hope that they both (or at least one of them) see the light. At Camp No Limits, during one of the parent support groups, I learned typical process for prosthetics at Shriners. I also learned that our process was far from typical.

Here's what happened... when we picked up the prosthetic, we were told that we had to pay our 10% of the prosthetic BEFORE it was released to us. We paid over $530 for the prosthetic and were on our way. There is another $394 sitting in limbo to see if we met more of our deductible. The original bill for the prosthetic was around $9000. I swiped my credit card and was sent on my way with a sports arm for Bella.

Here's what SHOULD have happened according to what I learned at Camp No Limits. Scheck and Siress should have billed insurance, insurance should have covered "their" portion. The remainder should have been billed back to Shriners for them to cover the remainder. That did not happen. Hence why I spent so many hours on the phone trying to get this situation resolved.

Some of you may be saying "Well it's only $530"... you are SO right, it's only money. I can't take it with me when I die. However why should my daughter suffer because she was born without fingers on her left hand? Why should she have to make adaptations in a world that was built for two handed individuals? Why should she not be able to be a "normal" kid, playing, doing cartwheels, riding bikes, doing PE class?

Remember back when she had the fall in PE class due to her limb difference? Yeah so that happened. It could have had long term ramifications, I'm so thankful that it did not. However, let's play devil's advocate. She only suffered in pain for seven days because she didn't have the balance due to her lack of fingers, causing her to fall and severely sprain her neck. This left her out of gym and recess for an entire week. To a kid, those are some of the highlights of your day. It could have left her paralyzed, with a head injury, a brain injury, to be catherized for urine... it could have changed our lives in a much different way. Could've but it didn't. Yes, this is ONE reason she needs a sports arm.

I teach pediatric nursing and the JOB of children is play, just like you have a job. My job is teaching nursing, Bella's job is to play and learn through that. This is one small example of how she can't play due to her limb difference. I would not allow her to do another hand stand until she received her prosthetic and be balanced... however, her injury also has made her have a fear of head stands. She recalls the pain, the missing out on being a kid, missing out on recess and sitting out of gym class. She talks about it, she doesn't want it to happen again.

Camp No Limits once again made me think of things and how Bella is affected. This mama bear is always working to protect her cubs. Today, that meant advocating for her for many hours on the phone. They can come back and say no... and they just might do that. In the end, I stood up for my girl and I won't back down. Not today, not ever.

Back in the insurance loop

Here we sit, back in the land of the insurance loop. I heard from Scheck and Siress yesterday about the process of the prosthetic. Bella was casted for the mold when we were down in Chicago after being seen at Shriners. She was told that "it usually takes about 3 days to make the prosthetic". What does that mean to a 7 year old? It means that in 3 days she'll have a prosthetic. Not the case. We had to talk about how it takes time and we have to practice patience. Something neither her or I are that good at!

So we are here, waiting once again for someone with two hands sitting behind a desk to approve a prosthetic for our daughter. It's so frustrating. It's frustrating because that "someone" sitting behind the desk gets to decide what fits for Bella. They don't live with her, they don't see her daily, they aren't aware of her challenges and yet that person gets to decide what's best. It irritates me. I'd happily invite them into our home, into our world and into Bella's day. I bet they won't even ask. They'll approve or deny and be done with their day. While we sit here, waiting.

What does that mean? That means in about 2-3 weeks insurance will make a decision and Scheck and Siress will call to provide me an update on our situation. What did I also discover? Our insurance is decent. They are estimating our  deductible will be about $1000, which is 10% of the cost of the prosthetic. Something for us to keep in mind as we budget for our future and for hers. Something for other parents of limb difference kids to keep in mind as well.

I'll keep you updated as we are updated on the progress.

Shriner's update

Last Friday, was our Shriner's appointment. Our drive down is a little under 2 hours and we forgot Bella's kindle. Let me tell you she was thrilled about that (insert eye roll here!). However, it was a really good opportunity for her and I to chat about some things that are going on in her little 7 year old life. A good chance for mama and Bella bonding.

We made it to Shriner's and then checked out inside the hospital a bit. We did some reading, played with a little 16 month old guy who was also waiting, fishtailed braided Bella's hair and did some more chatting. We got called back and met with Dr Ackerman, Michael (from scheck & siress prosthetics) and a resident. Dr Ackerman agreed with me that a sports arm with a terminal device would be a good fit for Bella at this point in time. Did I lose you yet? The terminal device is the part of the prosthetic that goes on her left arm and then the "hand" portion is interchangeable... Why go this route? Because this will allow her a mushroom tip (which is used for gymnastics, handstands and cartwheels) and a bike piece (that can clip onto her bike but releases easy, this could then be adapted for tennis, baseball bat, hockey, kayaking)... It gives her some options.

Why not a full prosthetic that she can wear all of the time? I want her to have a purpose, right now she does most things just fine. After her neck injury in PE is when I decided that she should probably have something to help prevent further injuries, to her neck, her wrist, her elbow or other injuries that could occur due to her limb difference and the length difference in her arms. IF later she decides that something would be beneficial ALL of the time, then we'll go that route. However, for now, this is a start.

Why Scheck and Siress? Shriner's in Chicago sends out their prosthetic needs to this company... Why? I'm not sure. What I am sure of is that they have great communication with Dr Ackerman which will help to get our insurance on board. This is one of the main problems we have in Milwaukee. Our pediatrician isn't well versed in prosthetic or limb differences and our needs, which means she would have to communicate better with Hanger. Hanger can't call and talk to her because then insurance would deny our claim because "they are trying to sell her something"... their words, not mine. That's one of the main reasons we went to Chicago, to get a hold of experts. Dr Ackerman is just that, an expert in amputations, limb differences and the needs related to such.

What about the cost? Before I get into this, I'm going to get on my soap box. Here goes. Why is it that someone with TWO hands gets to sit behind a desk and decide what MY daughter NEEDS and if it is appropriate or not? Why is it that this person gets to decide if it's a NEED or a WANT? Why should Bella have a harder time doing handstands or cartwheels because she was born different? We risk injury to her good limb from all of the extra stress that she places on that hand and those joints. The person behind the desk surely is considering all of those things right? Wrong...

Okay back to the cost. I stood at Shriner's and called to be sure Scheck and Siress was "in-network". It took me about 30 minutes to verify that is was and then we headed from Shriner's to their office. We have decent insurance. We've almost met our deductible. Once that is meant, we pay 10% and the insurance company pays 90%. This isn't too bad. The problem comes into place when the policy says the prosthetic can be replaced every 3 years, so then that means we'd  have to fight with insurance because she's a child and she's growing constantly so she will likely need something before the 3 years is up.

Why did I share the cost? I feel like it's important for other parents of kids with limb differences to realize there is a a cost, a significant one. We'll likely have to travel to Chicago 2-3 more times for appointments, that's time off of work and school as well as gas and wear and tear on my vehicle. The cost of the prosthetic as well and the things that go along with it are not cheap. The sleeve alone for the inside of the prosthetic (this helps decrease rubbing and ensure a good fit) is $500. Again, these are things that I as a parent of a child with a limb difference did not know or realize. As we move forward, these are things that we will keep in mind. Just some insight for those that are in our shoes.

I hope that this helps someone! I hope that you as a parent of a child with a limb difference can think about your child's needs as they arise and have some sort of understanding because of this blog. I hope those in the community can understand prosthetics a little better.