Update

I'd be lying if I said I wasn't mentally and emotionally exhausted after today. My heart broke into a thousand tiny pieces. I held it together until I finished work and got into my car. Then, the tears didn't stop for a long while.

I want to be clear before I share, this is an ADULT problem. I do NOT want Bella to know about this. She's 9, let's let her be nine. I'll worry about this situation and carry the burden for all of us. I want her to enjoy her childhood and not worry about insurance or coverage or anything else in the adult realm.

Today, we received the third denial notification for Bella's prosthetic. The first one when we submitted for pre approval. Then the pedi sent in more information and it was still denied. Then our pedi called for a peer to peer... also denied.

Apparently the insurance company says we already own a myoelectric arm and a helper arm. Bella only owns what we call the helper arm. It helps her do things safely, like bear weight on her upper extremities (think push ups, hand stands, cartwheels, tumbling). She also has used it for sports and for jump roping. Our pedi and the doctor there went back and forth about it... pedi says she only owns one and the insurance doctor says she owns two. Apparently it was a rough phone call.

Either way, I have one more chance to complete an appeal process. No pressure.

Why aren't we using Shriners. We had some issues with Shriners (you can read old blog posts to find out details). Shriners in Chicago does not make prosthetics in house, so they send you out which means you pay out of pocket for your prosthetic. Last time, insurance denied us once then approved. It went through insurance and then we paid a portion. So basically at Shriners, its the same process as here so there is absolutely NO benefit for us to drive back and forth to Chicago for fittings when we would still be dealing with the same thing. Does that make sense?

Why won't I agree to a gofundme? Here's the reason: There are a bunch of other families just like us that are fighting with insurance to get a prosthetic covered. I am an educated health care professional, I am a trained advocate, I am the mother of a child with a limb difference, I refuse to settle for no. I will advocate for Bella because she is mine. Advocating for Bella also means I'm telling insurance that this mama is a shark and I'll teach all the mamas and daddies to follow how to be sharks. They've messed with the wrong mama! So me simply paying because insurance is giving me a hell of a hard time, tells them that I will back down and they will win. This is not about winning or losing. This is all about providing EQUAL OPPORTUNITIES FOR ALL! Got that? Good!

So listen United Healthcare, tell me one more time that my child doesn't need a prosthetic. Tell me one more time how you two handed people are telling me what's right for my one handed daughter. Tell me one more time that she doesn't "need" it to be safe. I'll remind you about her neck and head injury in PE from having a limb difference. Tell me one more time that I have other options and when I ask you say "we aren't sure what those options are." Way to educate and empower your customers *big eye roll* You've met the mama shark and I certainly hope you are ready.

Oh how I love insurance...

That's sarcastic if you didn't get that or know me well. Hanger submitted for pre approval for Bella's current prosthetic, with a few minor changes in a bigger size. It was DENIED.

 

Ryan said "Well didn't you expect that?" Quite honestly, I didn't. I mean it's literally just a bigger size with a few minor changes to get a better fit. Imagine buying a different brand of jeans because they fit better, that's what we are talking about here by getting a better fit. Essentially the same cost, just a slightly different style. Think bell bottoms versus tight legs.

Hanger was super nice and called me to give me the update. They didn't have to call me, they could have waited for me to get the rejection letter in the mail but they didn't. They went above and beyond by reaching out. You could tell the lady from Hanger felt awful. I assured her that I knew it wasn't Hanger's fault... it's just that insurance is frustrating. She agreed, I think MOST people would agree. While it's great to have insurance, it's even better when it works as it should, which I find lately is rare.

What's a mom to do when something like this happens? I wasted no time and called the insurance company after hanging up. I got the run around... "I'm sorry that it was denied, I can tell you that we need more information."

"What information do you need? That she NEEDS one to ensure that she doesn't get another head or neck injury in gym. It provides safety of her wrist joint on the left as well as stability when she's weight bearing on her hands."

"So she can't weight bear on her hands?"

"No sir, she only has ONE hand. Her left arm is shorter which creates a balance issue which then creates a safety hazard."

"Well can she not weight bear then? Just not do the activity or do something else?"

"No sir, she's a 9 year old that wants to do what other kids do. She would LOVE to be active in PE like the other kids but she also had a neck injury due to just being a kid and doing the PE activities. It's like asking you to do a one handed push up when you can't even do a 2 handed push up... she can't do it."

"Can you tell me WHAT other options we have for prosthetics?" Then he proceeds to read me our coverage. I thanked him and reminded him that I too, had already read exactly what he read me and it's unclear and minimal... like 2 lines. He assured me that the medical team was making the best decision for Bella (insert giant sigh and eye roll from me) and that the health care professional could call and have a peer to peer.

"Great I'm a health care professional AND her mom, so I'd love to have a peer to peer."

"No ma'am like the doctor."

"Right because I'm JUST her mother, the one who lives with her every day AND a health care professional."

"Right since you aren't' her doctor we can't allow that."

"So can you educate ME on what her options are or what options would be covered by insurance so I can do some research to ensure that they would keep her safe and functioning like a normal 9 year old kid."

"I'm sorry but I can't, only the medical professionals can do that."

"Perfect I'll be happy to gain some insight from them"

"As I said, only the health care professional can talk to them."

You could say that we talked for 30 some minutes with NO resolution. It's safe to say that after everyone went to bed I cried and said multiple curse words. What the actual F*&^... I will protect and ADVOCATE for my kids until the day I die. So there we are... more waiting. More F bombs in the mean time about how much I love insurance and how the thought of a bunch of two handed people are sitting in a fancy office drinking Starbucks are making decisions about what's best for MY kid. Yes I'm judging them... feel free to judge me too. One thing you can always be sure of, that I will fight to keep my kid safe at all costs. In the meantime, I'll judge and say F bombs, though not in front of the kids... because well, boundaries :)

Overwhelmed

Yesterday we were hunting for a missing library book. We hunted everywhere, then it came to kid rooms. They looked like world war 16 had hit. There was crap EVERYWHERE, and I do mean EVERYWHERE. Under beds, stuffed in drawers, stuffed in closets, old food wrappers, old drinks, uncapped markers, you name it, it was there. You could probably feed a toddler with what I found... even a pint of blueberries. I was frustrated and overwhelmed with the amount of stuff all over.


If I, as an adult, was overwhelmed, how did my sweet babies feel? They are blessed with hand me down clothes, hand me down books and toys, new stuff from family, birthday gifts, holiday gifts, you name it. We are so lucky to have an abundance of stuff for them and we rarely have to buy something new, mostly just shoes and winter gear. That said, I felt overwhelmed. At one point, I walked outside on the back porch while my eyes filled with tears. How could all this love translate into frustration?

We've been downsizing "stuff" for Ryan and I. I mean do really need 10 pairs of jeans, when I only really wear my favorite pair? Do I really need 30 work dresses when I have a few favorites? So a coworker and I swapped some clothes. I got some stuff from her that I now love and then got rid of more from my closet since I was putting "new to me" stuff in. It felt good and fresh and better. It was less overwhelming to make a choice and dig through a hundred things when only a few were favorites. Ryan finally purged some of his work shirts *read old stained, paint covered, holey shirts). He felt better too.

Why not bring this joy to our kids? We've been doing it gradually. Grayson had 50 t-shirts. We picked his favorites and I put the rest in a storage bin for Luca. We'll go through that one more time soon because I've noticed he's still drawn to the same shirts over and over. We got rid of all of his jeans but two pairs, because the kid hates jeans. I put those in the same bin for Luca. We went through some of Bella's stuff last night and we still have WAY more to do.

The entire process, though tedious, will bring more happiness and less frustration to all of us.

I put it out there on a moms board yesterday about the toys. I hate "Taking toys away" when they are perfectly good. I've opted to go through with the kids this weekend (well at least to start) and then put the rest in a bucket in the basement for a bit before giving away or donating.

We've already started making a Christmas list with things to use or do... movie passes, indoor activities for winter, skating, snow shoes, snow shoe poles, sleds... that way it's stuff that is useful not just toys that build onto the already crazy amount of "stuff" that we own.

I've found that the more things they have in their room, the more overwhelmed their little minds get. They boys will play endless legos and Bella will play endless barbies. She has a desk in room that she never uses, its filled with stuff... it's going away this weekend. The boys have a ton of little animals that they used to love but their current is legos, so they are going away to store for now. Yes, it will be downstairs but that's where it will stay. Calm their minds, calm their hearts, calm the chaos as best we can.