Doctor update

Our pediatrician signed the prescription for the prosthetic. I knew she would, it was just a matter of WHEN it would all happen. It's kind of a lot of steps, I'll break it down a little.

1.  Find the best prosthetist in the Milwaukee area for kids AND upper limbs- DONE
2. Call pediatrician to get referral to prosthetist- DONE
3. Schedule appointment with prosthetist- DONE
4. Complete appointment- DONE
5. Hanger to send more information to pediatrician with more information from the visit and their recommendations for what would best meet Bella's needs and help her stay safe- DONE
6. Call pediatrician to verify they have the documentation from Hanger-DONE
7. Pediatrician to review Hanger's documentation, sign prescription and send it back to Hanger- DONE
8. Hanger to send information to insurance- WAITING
9. Call insurance to be sure they have the information necessary to make a decision-
10. Insurance company to review information sent- This usually takes 5-15 business days.
11. Call and encourage them to approve the prosthetic-
12. Insurance company must approve or deny prosthetic-
13. If approved, more forward with making the prosthetic-
14. Casting to fit prosthetic to Bella- DONE
15. Prosthetic completed and Bella to come in for fitting and adjustments-
16. Another fitting after initial adjustments, this could be a final fitting or may need more adjustments
17. Thank everyone who helped us in the process
18. Celebrate the new prosthetic

On my agenda

It's on my agenda to make myself a shirt that says "Advocate like a mother". Really! Advocating is NOT for the weak. You need a big pair of....

All jokes aside, this whole prosthetic process can be really frustrating. REALLY frustrating! So yeah, I'm not backing down. I was chosen to be Bella's mother for a reason and I will advocate for her until she gets what she needs to be successful. 

After the kids got off to school today, I was having a moment. A moment of sulking, of missing babies at home, of homework struggles, of school struggles, bus struggles, missing my dad, struggling with my body, work struggles... just life was really feeling a bit rough. I was daydreaming about loading us all up in the camper and going on endless adventures. Lofty goals, I know. 

(camping earlier this summer)

In my moment, I decided I was going to call insurance just to ensure that they received the request. They haven't. That's a joke right? Wrong. They had nothing on file from anyone regarding a new prosthetic... ugh. 

 I have worked in the medical field for 16 years and nothing frustrates me more than the medical field. In all seriousness, it can be a like you are circling the drain waiting and worrying. I remember back to when my mom had cancer, they did all the testing then it was hurry up and wait. There's no waiting with cancer people, run those tests and let's kick ass and take names! Thankfully my mom did just that. What's a mama to do when she finds out that basically we are still sitting at square one. You call Hanger to find out what's the hold up. I did just that and they are sending things over to our pediatrician today. She will then write a prescription for the prosthetic. The funny thing about all of this is that our pediatrician has NO other patients with limb differences or amputations, just Bella... It's safe to say she's really educated on the whole thing *rolling my eyes*. Thankfully she's a really smart woman and will figure out what she can do to get Bella what she needs. I'll expect a phone call early next week from them. 

Now we wait... I hope your patience is better than mine! 

Tiny insurance update

(At the Harley parade in downtown Milwaukee)

Yesterday I called our insurance to find out more about our prosthetic coverage. What they have written and publish for those that have our insurance clearly states one prosthetic every 3 years. We were assured today on the phone that it is different for kids because they grow and change so quickly and that it should be "no problem"... Time will tell...

Can we just call bullshit on a prosthetic every 3 years for adults though? Why is that a thing? If the fit isn't right, then they are just supposed to suffer and not get a new one? I'd love to hear our adult prosthetic using friends weigh in on this one.

On a side note, if you follow me on Facebook, you'll see that our friend Nicole just got new legs! This woman has so much determination and persistence! She's also a nurse, so I'm sure she's a strong advocate for herself and her needs. There's a video of her walking on her new legs on my Facebook page. Seriously, give that girl some love! On another note, watching her excitement was like watching a kid at Christmas. It's THAT good. To those of us with two perfectly functioning legs, this might not seem like a big deal. I'm telling you, check yourself... it's a GIANT deal. Like you and I have no clue how much this meant to her but you can tell by the video. It's sure to make you appreciate your own legs and have a true respect for this woman. She's amaze-balls!

Back to Bella, they also said that insurance only covers one device and it must be the most "cost effective". I followed up with "who determines what's the best fit for her that's the most cost effective if they've never even met her or evaluated her ability to function or not?" The answer was "a team of medical professionals". My response "What kind of medical professionals? What is their background and knowledge in limb differences or amputations?" Their response "There's a team that decides." No need to beat a dead horse so to speak. I got that the nice woman on the other end of the phone had no idea who was on that team. No reason for me to badger her about it.

How long does it take for insurance to determine what she's eligible for? 5-15 business days. The sweet woman said "Call back Friday because if they know you keep calling sometimes they push it through a little faster." Be persistent? You've got it lady!

Also confirmed was that insurance covers 80% after our deductible is met. We still have to meet our deductible but that shouldn't be an issue. That part, we already knew. That leaves us with coming up with the other 20%... we'll make that happen.

I'll update you again on Friday after I exercise persistence!

Prosthetic #2

Today we started the journey of a second prosthetic. In a new place, with new faces, a new prosthetist  and new insurance. This will bring new adventures and new challenges. It will bring a fresh set of eyes and an expert like no one else. The guy we saw this morning is dubbed the best for kids in the Milwaukee area, how lucky are we?! I know people who've used him and loved him so that brings another level of comfort and excitement.

We knew when Bella got her first one that they generally average about 12-18 months of use before a new one is needed. Kids grow and they grow quickly. Her current prosthetic is causing numbness in her nubbin, what would've been her thumb. She had tears in Idaho at Camp No Limits because it "doesn't feel good". Imagine me saying "put your size 7 shoes on" when you really wear a size 9. Your feet would hurt! That's how she feels wearing her current prosthetic. For her, it was literally at the 12 month mark that she started having discomfort which led to pain.

I mentioned challenges, yes challenges. With a new device there will be challenges. It will feel different, it will fit different, there will be a learning curve. Just like driving, when you get in a car that you aren't used to, you have to take a moment to get your bearings and figure it out. That'll be Bella, and us and her prosthetist. All working together to make the magic happen for Boo Bear.

Insurance challenges are sure to come. I'll spare you our deductible which hasn't yet been met but it's high. Then we are responsible for 20% of her prosthetic, though I'm sure there will be a denial or two first... because usually it's someone with two perfectly functioning hands making the decision *insert eye roll* We'll face that challenge when we get there. This girl has a NURSE mama, I know medical terminology and I know how to advocate like a mother... a dangerous combo for the person making those insurance decisions. Until then, we won't worry.

Today, we went to the Hanger Clinic that is inside of our Children's Hospital. (I'll save the why we switched for another blog.) We arrived about 25 minutes early and started reading a book for school. Hey no time like waiting to log those reading minutes!

We met our new prosthetist. From the minute we met, I knew he was our guy. He greeted Bella right away and started talking to her. Then I introduced myself. We went back into the room where he asked BELLA some more questions. Why were we there? What did she want him to do? What were the issues with her current prosthetic? What would she like in a new prosthetic? What bothered her with her current prosthetic? What did she use it for? What would she like to do? We talked about a new terminal device. Here's her current terminal device for reference. That's the piece that's too small.

 

This picture shows where you attach the different pieces, like the mushroom for gymnastics or the bike attachment (she also uses that for hockey and a couple of other things in PE)

We also talked about a myoelectric. That works by electrodes inside the arm that respond to her muscle movements. We talked about what she would be able to do with a myo that she doesn't currently do... pick up things with BOTH hands, she could use it on her bike, hold a barbie doll in her left hand, hold a cup in one hand and a plate in the other, sweep and use a dust pan :) Ha I added that one! The thing about a myoelectric is the cost, they are pricey! Google tells me they are $20,000-$100,000. As a parent, it's frustrating that insurance won't pick up more of the cost... I won't get on my soap box about insurance... right now! Anyhow, there are lots of possibilities with the myo that she won't otherwise be able to have. These are the things that those of us with two hands take for granted every.single.day.

The attachments for the prosthetic she has are still in great condition. She told him what she uses the attachments for and why she likes them. She also talked about what she would like to do. Monkey bars are a big one. We'll for sure add the jump rope attachment once she gets a new terminal device.

He wasted no time taking measurements and then casting her for a new device. He said that Hanger will contact our insurance company and then we will go from there. We'll have to wait to see what the coverage and allowances are so that we can make some decisions from there. She told him her current arm makes her super sweaty and she doesn't like that. He has some ideas that may be a better fit for her. I truly felt like he was an expert in this and would think outside of the box, if necessary, to help her get what works for her. 

(This was the only picture she let me take of the whole process!)

35 minutes in and out, which was awesome! We didn't feel rushed. I felt like he really listened to what Bella wanted and what would meet her needs. Bella said "Mom, he's SOOOO nice!" Ultimately, I know that he's the right guy for the job. I know that we will work collaborate to best meet the needs of Bella. I'll keep you all in the loop as we continue on this part of our lives. 

In the meantime, back to school for this gal!

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.

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.