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!

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!