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.

Insurance stuff

Post picking up Bella's prosthetic, I called our insurance to talk about finances a bit. In the conversation, the lady on the phone asked why we had not gone to somewhere closer. She said "Hanger is very close to you and you could have gone there. They are an in network provider and would have been covered."

I proceeded to explain to her our experience with Hanger. Hanger had ME call our pediatrician to discuss with her Bella's needs and my concerns regarding Bella's limb difference and safety when it comes to sporting and gymnastics activities. I did talk to her and she asked the Hanger call and talk with her about the different options. The staff at Hanger told me that according to insurance, they couldn't do that because that would be considered soliciting. I asked how to educate her on the options and was left with not much information. Since when is it my job as her mother to educate the pediatrician? Surely there was someone more educated on prosthetics and options for Bella than me! I knew of what could be helpful for her but that by no means means that I am the expert!

There are several options for prosthetics. I am not well versed on any one prosthetic. I know a little bit about the few I've seen at Camp No Limits or that friends have used. That's the extent of our experience. Just because I've seen them, does not mean they will work for Bella. This is why I was consulting the experts.

I then talked to Hanger again after our appointment at Shriners. I asked them to get our notes from Dr. Ackerman. I left several messages with NO return call. Can you sense my frustration here? Did they not want our business? Do they not have time to get her records? What is the problem here?

The weird thing is that last year, Hanger provided Bella's scholarship to attend camp. I couldn't be more appreciative of that! I was disappointed that although they provided our scholarship to attend Camp No Limits, I was being left with a bad taste in my mouth after their service to my child as a customer and patient was neglected. Why would they provide a scholarship and then not want our business? I was confused and I still remain confused.

In the end, our business went to where Shriner's referred us to start. The problem with that is the location is a 3 hour drive each way (Ugh, Chicago traffic how I hate thee!). Scheck and Siress provided us with a prosthetist that was an expert in Bella's needs. He presented options and talked about how each would or could benefit her. In the end, we went with what insurance would approve as well as what his recommendations stated.

Why am I sharing this all with you? I'm sharing it because as a parent of a child with a limb difference, YOU are your child's biggest advocate! You must be the voice of your child. You must not back down. You must speak up to get the needs of your child met. You are the only one that can do this. Know that you are enough. You are doing the best job you can for your child, though at times, it may not seem like it. At times, you may feel like you've been knocked down. Pick your ass back up and prepare to be strong once again! You've got this, I promise.

If you feel like you are struggling, know that there is a community of others out there to help you. I reached out to Mary (CNL Director) and Keegan (CNL Mentor) more times than I can even remember. Each time, they helped me, they encouraged me, they made me feel good about what I was doing for Bella. They lifted me up. I'm here for you. Reach out if you need me, I'll help you! No one should struggle alone. Reach out to your community!! It takes a village my sweet friends.

We have a prosthetic!

When I say we, I mean Bella... I mean it's hers but it's ours too, especially mine since I've worked my tail off on this to make it happen and make it happen right. This girl has no idea and that's a-okay. Someday, she'll appreciate me even more... or I can hope.

Today, we drove to Scheck and Siress to pick up her FINAL prosthetic. She has a terminal device and two adaptations. This means nothing to you "non-prosthetic" people. It means everything to her. She's made me promise to keep it a secret and not post ANY pictures until she shows it off at Camp No Limits, which happens on Thursday. The suspense is killing me, I so badly want to share! My promise to my girl means more than that though, so you'll have to wait. You can call her to find out more :) She loves texting, FaceTime and snapchat... all via my phone of course!

(She started young)

Thursday, Camp No Limits Idaho happens. I'm dying inside to get on that plane and go. Camp is like Christmas for me. I get to reunite with people that I love and meet new people that I'll grow to love in just four short days. It's life changing every single time. My heart grows ten fold and it's one of the happiest four days of the year for me. I hope that my kids feel the same.

Be on the lookout for LOTS of updates coming soon. Maybe I'll see if Bella wants to blog about getting her hand. We can at least post for one to release on Thursday night after all the CNL friends have seen it first :)

Upper limb prosthetic friends, be sure to bring your attachments for your sports arms so she can check them out. I can't wait to see all that she learns this year. I wonder if she'll spend any time with us at all. Usually she wonders off with the girls and I see her on Sunday to pick her back up. The joys of camp!

(My how she's changed in a year!)

So yep, in her bag, all set to go are the prosthetic parts! I'm dying on the inside that we actually have them in our house! FINALLY!

Hurry up... and wait...

I honestly thought we were going to pick up Bella's prosthetic on Wednesday. Much to my disappointment and hers, it was another fitting. Apparently there are several fittings before she actually receives the final device. Who knew? This stuff takes time people, time that we don't have!

Why don't we have time? Camp No Limits starts July 14th for us! While that seems like another 2 weeks away (because it is!), weekends don't count when they are working AND a holiday falls between now and then. I'm not the expert in prosthetics but the amazing thing about camp is that there are TONS of experts! There are OT's, PT's, limb different adults, youth and kids, parents who can help us and people that can influence Bella's use of her prosthetic in a way that Ryan and I can not. Let's be real, kids prefer someone other than their parents at certain times. The experts are not in our neighborhood or even our city. The experts are truly at Camp No Limits, yet one of the many reasons we attend yearly.

They did a fitting yesterday and made a few adjustments. Then it gets sent out to another place. There they mold her final prosthetic which is much lighter than the one she tried. She picked a fabric that they'll mold into her device too. The two pieces that go on the end of her terminal device weren't in yet either. So we wait...

While we are going through Scheck and Siress, Shriners also wants to see us when we pick up the final device. The problem with that is that Shriners only has appointments with Dr. Ackerman on Friday mornings. Friday's I work all day, as does Ryan. Not to mention that we only have one more Friday between now and camp (not counting tomorrow)... AND they don't think our device will be ready by that Friday. I THINK I have them convinced to have us come down on the Monday prior to camp, which also happens to be my day off. Then we can come back after camp on a Friday when I'm actually off to follow up with Shriners. Then if there are adjustments that need to be made to her prosthesis, we can also schedule at Scheck and Siress too.

So... we wait.

Prosthetic update!

Wednesday, Bella and I finally get to go to Chicago and pick up her prosthetic! To say we are excited might be an understatement. We'll probably test it a bit there then head back. I'm sure what I'm thinking in my head will be an hour long appointment will take much longer.

This is the "pick up" appointment. Tomorrow is when we pay for it. I'm so thankful for good insurance! We'll only be eating ramen for the next month :) Jokes aside, our out of pocket is 10% which comes out to just over $1,000. Why am I telling you this? Because nothings free. Not only is the time and headache of making all of these appointments then follow up, there's also figuring out where you'll pull the money from. It will also give us the opportunity to budget this in the future, knowing that she'll need a new one about every 18 months-2 years. So far, insurance only approves a "new device" every 3 years. That's a battle I'll start fighting later. I think it's important for parents of children with limb differences to also realize the cost. I thought when you went through Shriner's that things were cheaper. For us, we still have a co-pay at Shriners as well as our location doesn't do prosthetics, they contract that out. So that's how we ended up at Scheck and Siress. Neither here nor there, there's a cost, that if you are like most

We'll plan to pick it up then come home and really put it to use. Really test it out and be sure there are no weird rubbing places and that she has full opportunity to take full advantage of using it so we can follow up, hopefully before we head to Camp No Limits. She'll have one more appointment at least to follow up on fit.

This is pretty much perfect timing with Camp No Limits right around the corner! Camp will give her the opportunity with people that are similar to her to test drive the prosthetic fully. I'm sure there will be a number of people there who can encourage her and help her get used to using it for the tasks that she wanted it for.

So far, we'll all booked for camp, minus a rental car. Camp is quite a distance from the airport so we need a rental car to get from point A to point B. Then we need to pack, packing for 5 is NO easy task... I pack for 4 of us. That's a handful to be sure that you have everything. That's where lists come in handy!

I'll keep you all updated after our appointment on Wednesday!

Almost ready...

After stalking Scheck and Siress for weeks, I finally got a pre-approval letter in the mail from our insurance. When I called them on Wednesday, they still hadn't received the letter. Frustrating... so I faxed it over. I'm pretty sure that's what any mama bear when do when her baby bear has kept asking about it!

On Friday, Scheck and Siress called to verify that they also received the letter from insurance. The parts had been ordered and now we wait... We were told that once they were ordered they would be ready in 3-5 business days. What's a mom to do? Yes, call this coming Friday to follow up.

I did reach out to Camp No Limits friends to ask about the type of prosthetic. Being newbies to this whole thing, I wanted to be sure what they were ordering was really something that would be useful to Bella. I sent a text to Mary, CNL founder and director, and Keegan, one of the teen mentors who is one of Bella's buds (and mine too!). They were both able to verify that they thought it would work great for what we had in mind. Being able to quickly reach out to a trusted community is essential. I'm thankful that they both responded quickly! I'm beyond thankful to have them both in our lives.

Again, we wait. At least this time, we know exactly what we are waiting for and how long it SHOULD take... anything could change. I'll keep you all posted!

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.