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.

Just another day at the pool

Last week I took the kids to our typical pool location for an afternoon of sun and water fun. We were playing. Bella was practicing flipping in the water. Luca was showing off his flipping abilities and Grayson learned in two seconds flat. Me, I didn't even try! So she tried flipping for a solid 2 hours, I mean seriously 120 minutes people. No joke! She didn't quite master it but she was persistent!

While I was working with her, I noticed two girls about her age watching. Then I realized they were talking about her hand. Sometimes I want to go all mama bear, but I hold back. That day, I realized what they were doing and I wondered if she realized. I finally asked "Did you notice those girls looking at you? Maybe they know how to flip." She approached them, introduced herself and then they started playing.

Later, her and I were sitting poolside while her brothers played. I always walk the line... do I ask if she noticed or do I say nothing and pretend I didn't notice. I opted to ask. "Bella did you notice those girls you were playing with looking at your hand?"

"No, why?"

"I noticed and wondered if they said anything when you were playing with them."

"No, they didn't say anything. We just played."

"Does it bother you when people stare?"

"Sometimes but most of the time, they'll ask if they have a question. But, if they don't, that's on them."

"True fact sister boo!" I said as I hugged her tight. We continued our conversation about something completely unrelated to those girls.

I thought about it later though. How would I feel if I were Bella? Would I be as confident as she is? Would I be able to just look passed it and invite them to play? Would I even notice the stares? My sweet girl is a bigger, bolder, braver, more confident than I am. Where did she get that? How do I continue that as she grows? I build her up, that's how. I build me up, that's how. I remind her how kind she is, how she's always looking out for others, how caring she is to others. I remind her that I am SO very proud to be her mother and I'm so glad she's my daughter. I remind her that she's currently my favorite 9 year old on the planet and she's my favorite daughter. Yes, we laugh, because she's the ONLY 9 year old in our house and she's my ONLY daughter. I'm her favorite mother too :)

How do I build me up so that she knows that she can continue to be confident? Some days I run around in work out clothes after a gross workout. Guess what, don't care! I'm strong and I got a good workout even if I smell like locker room. Today I encouraged the kids to check out my "bulging biceps" to which Grayson responded "Your weakceps?".  I responded right back "You wish! This mama is STRONG!" As I flexed my biceps. Strong or not in the eyes of others, in my eyes, I'm strong  currently and I'm cool if others don't think that. I build myself up by feeling comfortable in heels and a dress or sweats and no bra. I remind Bella that it's most important to be yourself. I remind her that most of my friends now are "new friends" from the kids school and my closest friends remain in touch frequently. I remind her that it doesn't matter what the rest of her grade thinks of her, that it matters what SHE thinks of her.

How do you build up your kids? What works at your house? What can I learn from you?

Can we talk about "camp dads"?

Which ones are daughters and which ones are dads? Hard to tell with the hats and dresses but I'm pretty sure the facial hair gives it away! This is the second year that some of these guys have dressed up for the talent show because their girls asked them. Talk about a dedicated group of men.

Guess who? I'd hate to give it away BUT I will tell you there's yellow tape over his nipple because Luca promptly came down the stairs and said "I see your nipple"... nipple covered= problem solved!

Who's this stud? None other than my handsome husband! I about died when I saw him! I came down the stairs to ask him to go with me to take a family picture on the beach... needless to say that didn't happen. He also said he was glad he's not a woman because the dress is itchy. Too bad that's the least of my worries as a woman! Let's give him some boobs, some stretch marks, 9 months pregnant, and some heels and see how he does :) I'm kidding... kind of!

Can we talk about these lovely parents of TRIPLETS? Dad is a military cop. Mom is a badass, homeschooling, military wife with triplets with all different needs. He put the boobs in his dress on his own. I bet Erin is glad he belongs to her :) 

In all seriousness, I meet with these dad's in the parents group. They share intimate details of their lives and challenges they face, fears they face and the way they handle situations that challenge them with their kids. These dads are incredible. I wish I had a picture of ALL of the amazing dads at camp. Idaho camp has some killer dads that are super involved with their children. Another dad comes to mind that has a teen, he's a strong guy who is attempting to instill a strong dose of confidence in his kid. 

These guys are completely incredible. They share moments at camp with each other and the other families. Watching their bonds form stronger each day and each year continues to make me proud to know them all. 

At the end of camp, I'm reminded how blessed I am to have this man by my side. Thirteen years ago, our journey together started, in a car across the country. Thirteen years ago, I had no idea that we would be here today sharing this life together. After less than a year of dating, I knew that I wanted him to be my husband. Today and every day for the rest of my life, I will love this man to the depths of my heart and soul. I'm glad he's on my team to parent our babies. I'm glad I get to share Camp No Limits with him. Here's the thing, some times I take for granted that we have each other. In the last year especially, I'm reminded why we picked each other. Together we can work through anything and come out stronger together. I'm beyond lucky to have such a strong man by my side! 

Day one CNL Idaho!

When Mel said “it’s so rustric” she was SO right! Which is part of what draws us to this location. The little cabins, the rocky beach, the staff at the location, the boat rides, tubing, learning to swim, kayaking, hiking, the deck at Wells, the docks, the arch area… the snakes. Yep, I said it, this year I saw TWO snakes and thought that we might never come back to Camp Cross. I’m kidding, kind of. Snakes are NOT my friends.

You fly into Spokane and then make the trek over to Camp Cross, which is a little over an hour away. We rent a car. It would be a long Uber ride and honestly it just doesn’t seem realistic with the 5 of us and all of our luggage. It's really a pretty drive, so much lush green, mountains, sunshine. I was really soaking it up this time. 

This year we stopped at this little hole in the wall cheesesteak place that we found on my phone. It got great reviews so we opted to give it a shot. It was the best cheesesteak I've ever eaten and this girl loves her cheesesteak! Though with recent changes to my diet, I haven't had one in SO long. Maybe that's another reason I really loved it. Ryan and I both got different ones and loved them. The kids got cold cut sandwiches, lame! However after a long travel day, we started at 330 am, we opted to just let it be. Boy did they miss out! 

The first afternoon at camp is a lot of reuniting with old friends and making new friends. There’s no quicker place to make friends than right at camp! I can’t even explain how quickly friendships are formed or how they build over the years and through miles across the country. This picture is of "old friends" reuniting, or more like, the little girls sucked Keegan into kayaking the minute the waterfront was open!

These strangers become family by the end of the 3 ½ days. You come to know information that may not be shared with others. You hear about their story, the way their child’s limb difference occurred, their feelings behind finding out, the difficult experiences they’ve been through, the accomplishments, the fears, the way others react, how they advocate for their child…. The list goes on. I told my nursing students that I wish they could learn from the way these parents advocate for their children. I'm almost amazed when I leave camp at how sad I am to say good-bye. The photo below is new friends that were made instantly!

Due to our travel, we arrived right before waterfront activities. Lots of bonding occurs on that rocky shore, among kids, among adults, among volunteers and families... it's endless, honestly. Watching the kids go from barely knowing some of the campers to swimming together, jumping in the water holding hands, kayaking, canoeing, building rock forms and this year painting rocks!

I didn't get many pictures of "Rubber Pig Baseball" but I did happen to grab a couple. I'm not sure why it's called rubber pig baseball considering I only ever saw a rubber chicken! Either way, it was a blast.Fun was had by all! 

 We finished the night with S'mores by the campfire. The fire happens RIGHT on the rocky shore overlooking the water. It's so relaxing and refreshing.

I think everyone really likes the S'Mores considering my kids
kept asking if they could have more! The great thing is that we all come together again and teamwork makes the dream work. The volunteers, teens and adults just  all pitch in to help with all of the kids. It literally is a village of people that cares about you and your family. There's not a better reminder than the first day back at Camp No Limits!

Our people

How do you sum up a life-changing four-day event? I’m not sure there are even words that can fully describe the emotions that I feel. Every year we leave Camp No Limits with new friends and closer bonds to our old friends. Who knew it was possible to love people after only knowing them for four short days?  I can tell you that I know, I’ve experienced it, year after year when we attend CNL. It’s life-changing each and every time.

This was our second year at Camp No Limits Idaho. The location is breath taking. Those of you who have read about it before on the blog already know. Those of you who haven’t, let me share again. You arrive to a dock on the lake. You unload your stuff onto a boat and then take a short boat ride across the lake where you stay for the next four days. It’s rustic and perfect.

To be honest, I could spend anywhere with these people. We’ve been to Florida Camp No Limits, Maine Camp No Limits and Idaho Camp No Limits… there’s many other locations that we haven’t even explored. It’s not about the location. It’s about the people.  These people are unlike any others that you’ll meet. You go from complete strangers to know some very intimate details of their lives in such a short time. Dawson (one of the teen campers) hit the nail on the head when he said “these are my people”.

In the coming weeks, I’m going to share some highlights of our trip and OUR PEOPLE!