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.

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!

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? 

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

What's actually in the 504?

I shared the meeting process in a previous post but I didn't share what's in her actual 504. Today, I'll share what adaptations we make for school and what we have written in her 504. I'm doing this in hopes that it will help someone who is the parent of a child with a limb difference. I'm also sharing this so others know the things that help Bella be more successful in the school system.

Super simple change #1- put paper towels in a drawer near the sink in the classroom. While this may seem like a small thing, her teacher last year did it for the first time. Bella found it super kind that her teacher did that AND it was helpful because the paper towels didn't shred every time she tried to pull one from the dispenser. You know those dispensers that show a picture of both hands, try using one hand next time. They tear into small pieces or shred all together. Small changes= big difference!

A big focus is physical education and safety. We have it written in our plan to "consult between parent, PE teacher, and district PT quarterly to review unit activities and adapt if necessary". Bella's PE teacher and I have really great communication and this has helped. We actually met last week which was really helpful for talking about what units are coming up and our plan. We had a solid plan in place prior to the 504 meeting which is one reason we breezed through the official 504 meeting.

Bella and her PE teacher for pre-teaching outside of the classroom. This occurred last year and according to her PE teacher a really great boost in her self-confidence. Once the skill came up during the class, Bella and her PE teacher already had their plan in place for adaptations if necessary. This allowed her to walk into PE and start the skill right away. This allows her to feel comfortable and also helps that it doesn't take time away from the actual activity during PE.

Safety during PE is essential, especially when it comes to weight bearing on her upper extremities (arms). When a person is missing fingers, their balance and stability is compromised. Her prosthetic has really leveled the playing field. It allows her balance and stability and allows her to safely weight bear on her arms and hands. That alone is worth the cost in my eyes! When Bella does strength or balancing activities in PE, I've asked for her to be closer to the teacher so she can be more closely observed. This is written in her 504.

Another "little thing" that we do is photo copy longer math work or class notes to reduce writing fatigue. In fourth grade in our district, kids are assigned an I-pad through school. This is really helpful because now Bella can take a photo (suggested by the principal- which I think is a great idea!) so that she can have the information for later. You can also edit the photos so she could "write" on the screen. Anything we can do to help decrease the workload of that right hand, we will!

She also has the option to use technology resources for assignments, such as Voice to text, read write, word prediction and see saw. That's written exactly in her 504 plan. I wanted her to be able to voice to text for longer assignments, again to reduce workload on her right hand. Sometimes, I will transcribe her answers or write things when we are home in order to decrease the workload. If she has a paragraph to write, she will tell me what to write and I write her words exactly.

The last thing is allowing her extra time for self help and daily living activities. Buttons, zippers, shoe tying are usually a non-issue at this point, however sometimes it does take her a little longer. I'm not talking 10 minutes longer, just a minute or two. The transition from lunch to recess when you have to change to winter gear can be problematic. We are still working on a glove that will work to keep her left hand warm and allow her to still be independent.

This year, we'll face recorders in music. Lord help me... kidding, kind of! Anyhow, we'll have to figure out what works for that!

504 meeting update

Our 504 meeting was Tuesday morning. Our 504 team this year included the principal, a district physical therapist, the physical education teacher, the school psychologist (she kind of runs the meeting), Bella's classroom teacher and myself. The only person new to the meeting was Bella's classroom teacher since that changes year to year.

I do not bring my kids to the 504 meetings. I've found that mostly it's boring adult talk... though I forsee that in Bella's future this might be something she wants to be a part of. It will teach her how to advocate for the things that she needs as she gets older. We'll address that when we get there. So, where did the kids go during a meeting at 7:30am? Thankfully I have a fabulous friend and neighbor that watched the boys so they didn't have to be entertained. They love going there so they were thrilled! Bella had her FIRST choir practice, so she was busy as well.

Going into the meeting, I think it's important that I have my own expectation. My expectation ultimately includes Bella staying safe and being cautious with overuse of her right hand. You and I get to do things with both hands, like cleaning, opening a jar or a door, holding things, typing... remember for her, her right hand is taxed with 100% of the work. She's nine now so it might not be a current issue, however I assume it will be an issue as she grows and gets older.

This years meeting was a breeze, like less than 30 minutes! I brought her old plan so I could reference it. The psychologist had her new tentative 504 plan. We whizzed through everything and were done quickly. It was truly a seamless process. I'm so thankful for our school and the people that are passionate about helping our kids succeed!