The joys of being a mama

Being a parent is NO joke. I just had a conversation with one of my aunts about how as parents we do the very best we can and sometimes its just not enough, whether thats because our kids feel like its not enough or we feel like its not enough. There have been MANY times I've felt like a failure as a parent. I remember one time not strapping Bella into the bouncy seat and finding that she bounced right onto the floor! Hello I'm a pediatric nurse, don't I know better! Clearly not.

I mentioned before that we've had a rough few months with Luna being sick. It took a toll on all of us emotionally and mentally. Kids handle it in such different ways. It's the first close loss that my kiddos have experience and unfortunately it won't be the last. We, as parents, have tried to support them in any way that we can. We are beyond blessed to have a community of amazing teachers, incredible friends and support from all sides. Luca brought a sweet note home from a friend about how she was sorry. It was so thoughtful! Bella brought a note home from a friend too. So kind! Grayson's friend at school talked to him about it too. Such support from all sides and its been so important for the kids to feel that love.

Last night, Grayson was acting strange when he came home from school. He was extra snuggly and lovey. He's usually a snuggly guy but I could tell he was off. He snuggled on the couch and we read for an hour together. He started and FINISHED this book in one day! He still wouldn't open up about what was going on.

He came out after he went to bed and was crying over a wiggly tooth then I asked him if he wanted to just snuggle a bit longer. We snuggled until he fell asleep. As I watched him so relaxed curled up next to me, I just soaked it all in. This big boy was going to be turning 8 this year, how is that even possible? 

I thought about how powerful being a mother really was. I had the ability in that very moment to calm my child. I had the ability to rub his head and hold his hand, I knew what he liked and what made him feel comfortable and safe. I had the ability to just snuggle him until his body relaxed and he fell asleep. I had the power to help him calm down and just be peaceful. What an incredible gift as a parent. 

So in the midst of the chaos and the storms of life, I was given such an amazing gift. Being a parent is far from easy but it is so worth it! 

Helping friends

Bella has been a little sidekick for our friend, Amy at A Doll Like Me. She's BLOWING up on her gofundme campaign and is interviewing left and right! Amy asked if Bella could help out with sharing why having a doll like you is important and Bella, of course, has strong opinions about why! I really enjoyed being there and listening to them both speak. Amy is SO passionate about what she does and she's a one woman show. She's currently running the media, making the dolls, communicating with all of those interested, communicating with people about interviews. She might be the definition of insane currently, but we still love her! As for us, we are SUPER proud of her and happy to help! 

Be a little LESS judgey

I was at the gym on Saturday minding my own business when I overheard a woman say "She should've bought at least 25 boxes from her daughter!"... they were talking about a little Girl Scout who only sold 25 boxes of cookies. I continued getting ready but it got under my skin. It got so far under my skin that 2 days later, I'm still annoyed by it.

Can we be a little less judgey please? I mean for the love of Pete, she sold 25 boxes, I'm sure other girls sold 100, some even 200... but lets be real, not all of us have it in us every year to beg people to buy shit from our children.

Let's think about the stuff my kids raise money for: Jump Rope for Heart, Girl Scouts, Camp No Limits, Magazine sales, spring fundraiser, fall fundraiser... that's only the start I'm sure. But here's the thing, while I love Girl Scouts and I will eat the crap out of some thin mints, I have to balance my priorities.

This year during cookie sales our Luna girl was SO sick. The last thing I cared about was how many boxes of cookies my daughter sold OR how many I bought. My concern was for our dog, how my kids were dealing with a dog they knew was sick, balancing work, home, relationships, balancing homework and fun, balancing how to best help our Luna to be sure she was getting the best care possible and the most love. There were MANY days I spent home snuggling her instead of running errands or going to the gym. There were days I spent cleaning up dog accidents and then loving Luna. There were days I ate too many chocolates and days I didn't drink enough water. My priority in all of it was Luna.

What I'm saying is that people EVERY WHERE are listening, even people in the gym locker room. I'm a girl scout mom and I felt judged by these bitches in the locker room. Yes I said bitches. Think about kindness, think about love, think about joy. A little less negativity people.

Tonight, I listened to my sweet 9 year old cry herself to sleep about missing her dog. About missing her snuggles and her "unconditional love, she just loved you no matter what. If you were sad or happy, she loved you. AND she knew, she knew if you were sad and needed extra love." I told her that someday, she'd understand that as her mama I loved her the same way her sweet pup did. I love her no matter what. My words "if you are happy or sad, if you are a total jerk or the sweetest angel, if you seriously fail a test or if you do amazing, I love you endlessly, no matter what. Someday, when you are a mama, I hope you realize that I love you like Luna did."

Be like Luna, love unconditionally, no matter what.

Big emotional month

January can end, I'd like a do-over... This month has been rough. Our dog is sick, like really sick. Many of you follow me on Facebook and seen our saga. We got Luna when she was a pup and picked her because she laid in Bella's lap on her back with her legs up. I knew that moment that SHE was OUR dog! A week later, I found out I was pregnant with our second (now Grayson) and had a WTF are we doing moment! Bella was a solid year old, we were about to have a puppy AND now we were pregnant. What on earth were we thinking? We weren't... and 8 years later, it's clearly all worked out.

We picked her name because of a Jason Mraz song "Bella Luna". I loved the name Luna. Her middle name Claire is from San Diego where Ryan and I met. He lived near Claremont Mesa. Luna Claire it was and she became fully registered as a Zizzo.

What I didn't know is the immense amount of love a dog could bring to our lives. We always had outdoor dogs when I was little and Ryan didn't have dogs. We weren't outdoor dog kind of people so Luna has always been an inside dog. Luna greets you with a smile when you enter the door, for real, she smiles, ask anyone who's met her. She's full of endless love, never judges, rarely barks, never growls, always listens. She's tolerated babies crawling over her, babies laying on her, tons of hugs, lots of tummy and ear rubs. She's the most loving dog I've ever met. The kids have been raised with her.

She's been sick since just after the first of the year. We initially took her to the emergency vet for a fever and just acting off. We thought we were on the upswing and we were wrong. Back to our vet for more testing. New antibiotics, more waiting. Still a super sick, lethargic, sad looking girl. I've shed more tears then I care to count. Every time I look at her, I think of her laying on my chest when Luca was breech and just waiting patiently with me while I patiently waited for him to flip. I remember when she climbed into Bella's bouncy seat when Bella was a baby and looking over and laughing. Bouncy seats aren't just for babies, puppies love them too. 

Hug your puppies tight while we await the final results of Luna's labs. This sweet pup is straight from God, I'm sure of it. 

New Year, New Us!

The end of this year was mentally and emotionally exhausting when it came to this prosthetic thing. I've done a lot of video updates on Facebook because I just simply didn't have the energy to write a blog about the heartache. Then, just like that, magic happened.

RIGHT before the end of the year, I got a call from our prosthetist that he was 99% sure that we were going to get approval. Well, he was right! I called insurance to verify a couple of days later and was told the news from them. I had to pull myself together because I was driving and calling. It was emotional for sure. Those of you on Facebook, saw that emotional reaction a little bit later. I cried like a baby and the lady on the phone said "Isn't this good news?" When I explained what we had been through she was the sweetest mama on the other end. She mentioned she had 2 daughters and can't imagine having to wait on something like this and have it be out of her control. She had empathy and lots of it. It was like she was the person placed on that call for a reason.

I called Hanger to confirm with them that it was now in writing on our file. I was crying as I talked. The guy on the other end said "This is great news". I said I was crying happy tears. Yes I'm that woman! I cry when I'm mad and sad, angry, frustrated, happy, excited. Yeah I'm a mess :)

We picked up Bella's NEW prosthetic on December 26th! It was my mom's birthday too AND she and my step-dad got to share that with us. Thankfully because my mom took all of the pictures! It was better than Christmas and even Bella agreed. You guys, seriously, this is BIG! For a nine-year-old child to have such excitement and emotion about something like this was HUGE! She is a girl that is wise beyond her years with an old soul and she realizes things like this... Her face was BETTER and filled with more joy in the office than it was Christmas morning, I swear.

This is the only picture I took the entire visit! Yeah, I was soaking it all in! 

Here's the thing people, while this was an emotional rollercoaster for me, Bella didn't know any of that. She's nine. It's my job as her mama to protect her. She knew there was a wait because it was out of my control and that I was "working on it" but nothing more. I wrote the appeals, I called the insurance company almost daily since September when this process started. I cried at night after people went to bed. To have your child continually ask you "When is it coming? When can I use it again? How much longer?" was like knives stabbing my heart. I just wanted to make it happen yesterday! When it did, my heart was filled with so much joy watching her sweet little innocent face. 

I'll share our appeals letters with you here because you are welcome to tweak them to make them your own. Don't back down! Don't give up! Our kids depend on it! Our limb different and limb loss community depend on it! Show these insurance companies that this is important shit! Don't let them instill fear in you and IF or when they do, fight harder. 

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! 

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.

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!

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! 

504 meeting

Part of our 504 plan is to meet with Physical Education teacher quarterly. We recently met for fourth grade first quarter. This part of our 504 is really important since there are modifications that need to be made or changes that need to occur to keep Bella safe and to ensure she is able to participate.

Her PE teacher is awesome. She's constantly brainstorming ways to help Bella. She came up with some time outside of PE to trial a new skill that might present challenges. Bella never really mentioned it to me outside of our initially 504 meeting last year. Her teacher would say that it was working out well and that it was useful.

When we met, I figured out just how useful that time was for both of them. They could talk then make changes or brainstorm together. Hearing straight from the teacher how it worked for them was great. It made me realize just how hard she is working on Bella's behalf. I could tell that she had already thought about some ways to help her for this coming year.

We talked about her current prosthetic and the fit. This could present some challenges for weight bearing on her hands at the start of this year. She suggested manipulating the scheduling of testing off for Bella so that she could be successful in the skills. This may mean that we have to wait for her new prosthetic for her test off. One example is push-ups. She can't really weight bear safely on her left "hand" for push ups. The prosthetic ensures that the wrist on her left hand is safe, it also ensures that she has a stable surface. The "mushroom" attachment provides the stable surface. For you or I, we have two hands with fingers to keep us stable.

We talked a lot about how Bella had changed last year. Her teacher felt her prosthetic made a big difference in her mindset. She worked hard to figure out a way to make things work. She was quick to put on her prosthetic at appropriate times, sometimes she would have a friend help. She talked about the skills that she utilized the prosthetic for. From hockey, to jump rope, the tumbling... the list is extensive. It allowed her to have the same opportunities as her peers! It's all about leveling the playing field and making things EQUAL.

She will never have two typical functioning hands. For us and for her, she shouldn't be excluded due to her limb difference. She should be able to do all of the things the other kids are doing, limb difference or not! She ties her shoes, fixes her own ponytails and does so many things in a way that's different from me but it works for HER. My job as her mama is to advocate for her to ensure that she is getting those equal opportunities. I'm happy to report that her PE teacher is also ensuring that she has equal opportunities as well.

My eyes welled up with tears when she talked about the difference she has seen in Bella since she got her prosthetic. Does she use it every day for every task? No... it's really task specific. You can't use the mushroom attachment for holding pencils. It's specific to upper extremity weight bearing exercises. You can't use the other attachment for much that we've found. We've used it for bikes but it pinches her inner elbow. We've used cord keepers and that attachment for hockey, jump rope and a few other things.

(She has the one on the far left of the photo)

If you don't have a 504 for your limb difference child, I would recommend looking into one. It just puts some things into place that might help you keep your child safe and functioning at their full ability. We have her FULL 504 meeting in a little over a week. I'll update as we have the full plan in place in hopes that it can help another family. 

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!

Back to school!

Today is a big day at our house! ALL of the kids will be in school. While I know there are mamas who sit and cry in the corner over their last baby starting school, I'm not one of them. I get it, I really, really do. I empathize with you but I will not be the mama sitting with you.

While I get that your last baby is going to school, I'm embracing this phase in our life. I've embraced each phase as it's come and as it's gone. I realize my days of spending all day with my last baby are done, I get to celebrate and appreciate him a whole new way.

Luca is beyond ready to start kindergarten. I've been told before that he needs the stimulation. He's quick to learn and loves making friends. Heck, after less than a day, he learned to tie his shoe. I think he'll pick up the school routine quickly. Maybe not easily, but he'll get the hang of it quickly. The morning bustle, the getting on the bus, getting off the bus, finding his way, meeting new friends, embracing a different kind of routine, then coming home and all that comes along with end of the day stuff.

A new school year means new things for everyone. It means seeing old friends. It means welcoming and making new friends, which we've already accomplished this summer! It means new schedules, fresh lunches, routines, schedules, new teachers, new classmates. It's really exciting. I try to build up the excitement a lot at home, especially about how amazing their teachers will be. I really value and appreciate our teachers, which is another story.

Mama starts a new semester today too. It's hard to believe I've been teaching full time for almost 3 years. With each semester means changes as well. A new student group, a new schedule, new colleagues and old friends. I get a "fresh start" with each new trimester, it's kind of exciting and fun in my opinion.

I've asked Bella about talking to her class. I've done this EVERY YEAR since kindergarten. Here's the thing, this year I asked and she asked to wait and see.

"Mom I mostly know every one. I mean there are 3 new kids but let's just wait and see how the first day goes."

While I died a little inside, I watched her sweet little face. She was confident and strong. She was brave and happy. She is growing up and she's becoming more certain of who she is and what she wants. This makes me one proud mama. I'll keep you all posted on her final decision in the days to come!

Here comes my soap box

I went to the Habitat Humanity Restore because I'm a sucker for most all things second hand. It might be a slight obsession. I'd rather breathe new life into something than buy something new. No, really! Bella even says her favorite store is Goodwill :)

I'm going to get up on a soapbox now... Hold on tight! I was having a great day. I got a great workout in with plenty of sweat and worked my muscles to complete fatigue. I went an got a 20 minute chair massage at the mall, which was basically like 20 minutes of what I imagine heaven to be like. Then, I ran to the restore because our kitchen table has seen better days... like LOTS of better days. I walked in on cloud 27 from my massage. Then a man rolled a table by. As he rolled passed he said loud enough for me to hear "Nice tits". I stopped dead in my tracks, like I was stung and paralyzed.

Who says stuff like that? I'll tell you who, some douche bag that thinks women are a piece of meat. That views women by the size of their breasts and not the size of their brain, kindness or intelligence.

Why did this man think it was okay to say something like that? What would his parents, his children or maybe even his wife think? Those questions I can't answer.

What was I wearing? I took this picture when I was feeling defeated by this guy... that was my shirt. I took a look down at my attire. Cleavage was COMPLETELY covered. I was wearing a t-shirt, jean shorts and flip flops. Then I thought for a second, even if I was wearing my bikini or my cleavage was out, it's not his place to make rude, obscene comments like that. On a side note I thought, that would be like saying a woman deserves to be raped because of her attire. No woman deserves that!

How could I prevent my boys from saying things to women? I can tell you right now how we are doing in this area. The word stupid and hate are "naughty words" from our house. If someone says that, it's immediate time out. They hear their father compliment me. We talk about people being different, being beautiful and pretty. Things are beautiful and pretty, like butterflies. Luca consistently says "look at that beautiful butterfly mama!" When he sees one. I love that! Grayson is quick to tell me that I look pretty. He'll also tell me if I should wear something else... "Mom wear those shoes, they look really nice." Luca just started saying "that's ugly" and I've been working on correcting him. It might be ugly to him but saying that word doesn't make people feel good and can cause sadness. We talk about how things are ugly to some people and beautiful to others.

How could I prevent my Bella from having that said to her? I will remind her that her beauty isn't determined by her looks. Her beauty is determined by her inside, her kindness, the way she treats others, her strength and determination. The boys will get the same message. I will remind her that she should wear lipstick if it makes her feel good, not because it makes others think she's pretty. I will tell her to lift weights to be strong and push the limits of her body. So that she knows being strong is a feeling you can only get from yourself and being physically and mentally strong is something she should value. Am I as strong as others? No, but to me, I feel strong. That's what matters.

I will continue to remind her that men don't have control of her and how she feels... even though my mood completely changed when this man did that. Here's the thing, it caught me off guard and NOW I know how to react and what to say should this ever happen again... to which I pray, it doesn't.

Go off and teach your kids to be kind...

To the guy that stole my spark today, I've got it back and you, my friend, are a dick.