Wednesday, September 19, 2018

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!

Friday, September 14, 2018

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! 

Thursday, September 13, 2018

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. 

Wednesday, September 12, 2018

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!

Monday, September 10, 2018

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

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!

Wednesday, September 5, 2018

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!

Monday, September 3, 2018

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.

504 meeting update

Our 504 meeting was Tuesday morning. Our 504 team this year included the principal, a district physical therapist, the physical education te...