Wednesday, November 7, 2018

It's November?!

Life is just getting away from me. We're well into the first quarter and gearing up for Thanksgiving. How is that possible?
I joined Bella on a field trip about Folk Art and it was super fun! It was nice to see all of the interactions amongst peers, the incredible teachers, my parent friends, and the vintage view finder... Did I mention it's a view finder from when I was a kid? I'm not that old! Either way, I had a great time and so did she. I'm thrilled she still lets me and encourages me to come along. 

This is my partner in crime at work. I'm not sure what I'd do without her. She's a veteran so lets all thank her for her service to our country and her continued to service to endless students and faculty (me included!) We've officially made it through half the trimester once again! 

This guy got some killer face paint from his mama for Halloween and he let his Daddy pull another lose tooth. He's a brave one! 

This guy is surviving and LOVING kindergarten. He's made tons of friends and he's soaking in things like a sponge. He's a "bucket filler" these days more than a "bucket dipper". 

It's November 7th so I need to start my gratitude list! We've started at home too, which has been really fun with the kids! 

1. I'm thankful for my neighbors who are amazing and help us with so many things. 
2. I'm thankful for a job that I enjoy which it makes it seem a little less like work
3. I'm thankful for a husband that's always encouraging me to chase my dreams
4. I'm thankful for a college degree that provides opportunities that others aren't able to have
5. I'm thankful for Bella's kindness to others. She really looks out for her friends and will stand up to those that aren't kind. 
6. I'm thankful for the ability to have days off to go to lunch with the kids, go on field trips, help in the classroom and even have lunch with girlfriends. 
7. I'm thankful for my mom friends, the ones that always make me laugh, lift me up when I'm down, that help with my kids, that treat my kids like their own, that keep me sane... most days!

On a BIG update on the prosthetic front. I've sent in the appeal and now we wait again... this is a super long process. I can't begin to tell you how stinking frustrated I am with the whole thing. I've called United Healthcare almost every damn day. On that note, I'm thankful for a phone, insurance (even if it pisses me off), the ability to fight, my ability to advocate, the knowledge that I have about pediatric patients and prosthetics and our limb different family. We should know by November 20th if we are approved or not. Until then, we have an appointment at Hanger on Friday! 

It's November, be thankful! Find something every stinking day to be thankful for. Find SOMEONE to be thankful for and tell them that you are thankful for them. People, we have a lot to be thankful for! 

Friday, October 26, 2018

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.

Thursday, October 18, 2018

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 :)

Friday, October 5, 2018

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.

Friday, September 28, 2018

Most people are good

Have you heard the Luke Bryan song "Most People Are Good"? It's one of Bella and I's favorite songs. It's a great song!

"I believe most people are good and most mama's oughta qualify for sainthood...
I believe this world ain't half as bad as it looks. I believe most people are good."

If you ever see us jamming out in the minivan, it very well might be to this song. We blast it!

Here's the thing, there's so much bad in this world but what if, just what if we spend more time focusing on the good?

I reached out a few days ago to the founder of the Lucky Fin Project, Molly Stapleman, about music and a recorder. Bella's PE teacher this year mentioned that in the second semester they do recorders in music and she was thinking about how Bella would do that. (Side note: I love that she's thinking about Bella and how she can help her or what might help her even if it's NOT a PE thing. That's amazing!) Molly is an amazing advocate for children with limb differences. Hello she founded the Lucky Fin Project! I've followed her since before Bella was born. I should add that I've never actually met her in person, someday though, someday!

Molly offered to send us a recorder for Bella for FREE! This might not seem like a big deal to the rest of you. However for a kiddo with one hand that just wants to do everything that everyone else does, it's GIANT!! I was brought to tears when she said she'd send one and then said it was free. I offered to pay and she said no. Who does that? I'll tell you who, Molly does!

The community for kids and families of kids with limb difference is nothing short of amazing. I know I'm super passionate about it. I might even annoy the crap out of people with my excitement but seriously, be the good there is in this world. Everyone should be a little more like Molly!

Tuesday, September 25, 2018

I'm a kick butt mom... or not.

Yesterday, I was killing it. I spent my day off by going to the gym, running some errands, finishing a couple projects, doing some real work, cooking and getting ready for the kids to come home. I was feeling on top of the world. 

The kids came home, visited with Grandma Linda for a bit and we started right away on homework. An hour and a half later, I knocked it out of the park. All the homework was done, kids were happy, I was happy. We were playing and snuggling on the couch. 

The rest of the evening was as normal. Dinner, bath, bed at 7 pm. Yes my kids go to bed at 7, they wake up between 530-6 NO MATTER WHAT. That means, if I put them to bed at midnight, they wake up between 530-6 and are grumpy all day. They go to bed at 9, wake up between 530-6 and still grumpiness. Bed at 7 means they actually have a little down time and then fall fast asleep. It leads to less melt downs and better days. If you have some sort of solution to this habit they've had since BIRTH, I'm all ears! 

I sat on the couch at the end of the night, after slaying the day, to realize we forgot one piece of Luca's homework. I was no longer a kick butt mom, I was a failure. Damn it, kindergarten homework, completely forgotten. 

Then I sat there thinking, isn't family and playing important? I mean they get off the bus at 4 and we spent until almost dinner doing homework. We had 30 minutes of bliss, of playing, snuggling, giggling, playing games on the floor, playing board games. That NEVER happens during the week. Did I really fail because my kid didn't do 10-15 minutes of homework? 

This shit is hard you guys. Like really hard. There are TWO of us battling homework, snacks, dinner, baths, snuggles, bedtime. What do single parents do? What do parents of more than 3 kids do? Do they fail because they didn't do one sheet of homework? Where does family time come into all of this? 

We stress "Work life balance" in the "real world"... is there really a work life balance? Is there really a school and life balance? I'm starting to wonder. I mean these are my babies. My sweet little 5 year old has HOMEWORK you all! Is it really necessary after he's been at school all day to do more? I think his little brain needs a break. Does he HAVE to read in kindergarten? The answer is yes... because he'll be behind if he doesn't. A part of this all breaks my heart. Can't he just enjoy his life a little? What gives? 

How the heck do you balance it all? I'm lucky that Ryan and I are both home very close to 4 pm. That's what helps our ship keep going... I have NO idea what we would do if I was still working 12 hour shifts... really NO clue! I'm simply saying there has to be a different way for them to excel without killing them with endless work at such a young age. Why must there be SO much pressure at the elementary level?

I welcome your thoughts, your advice, your tips. What works for you? How do YOU balance it all? How do your kids balance it all? What does YOUR school send home for "homework? 

Sunday, September 23, 2018

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

It's November?!

Life is just getting away from me. We're well into the first quarter and gearing up for Thanksgiving. How is that possible? I joined...