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! 

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. 

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! 

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!

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!

Giving Tuesday

Giving Tuesday kicks off the season after Thanksgiving. According to the Giving Tuesday website, it kicks off the "charitable season of giving". This giving tuesday, I'm asking you to really think about the organization that you pick to donate... that is if you do. I'm asking you to give mindfully not mindlessly. Many organizations take our money and very little goes to the actual cause. It bothers me to think that money I have given in years passed does not 100% go to the cause I am supporting. 

The organization that means the most to our family today and every day is Camp No Limits. As many of you know, we attend camp every year. If we could attend every location, we would! But alas, work, school, life and finances for travel get in our way. Camp truly makes our year brighter. While we only attend once a year, the friendships that we make through camp last a lifetime. The support and love carry us through to the next time we attend camp. It's like having a family that supports you and lifts you up when you meet struggles. The kids and families that we meet through camp change our lives. 

I'm asking you to consider giving to Camp No Limits or give to our fund for travels to get to camp. Last year, it cost us over $3200 to get to camp, between airfare and rental car amongst other things. That said, it was worth every penny. I will continue to work my tail off every year to make camp a possibility for our family. Without the help of you and others like you, we would not have been able to attend camp. Last year, we received a scholarship to pay for camp and we only had to pay the $3200 to get there! That's a HUGE blessing! 

If Giving Tuesday is not your thing, no worries, I'll simply ask that you spread awareness. Spread awareness about Camp No Limits, spread awareness about limb differences, share our names with others so that I may help another family that is in our shoes, so that I can help them advocate for their child, so that I can be the support that they need, so that camp can be the family that they need, so that they can be aware of the many people that are in their shoes! 

Thank you for considering. Thank you for following our blog, for listening to our stories. 

Our first meeting post 504

The PE teacher reached out to me for a meeting related to Bella's 504 plan. I met with two of the PE teachers to discuss fitness testing that would be coming up and football. Okay, head injury central! Hopefully she doesn't like football :) That's the nurse mom in me talking. Back to the story, so we set up a before school meeting to talk about their ideas.

When we met, they were prepared with the items that would be used for fitness testing and what they thought Bella would need. They didn't forsee any concerns or issues with her doing well, but they wanted to be sure that they were doing what was best for her. I'm glad that they were really putting some thought into her limb difference and what that meant in PE for her.

Needless to say, we both agreed that she should wear her prosthetic for any weight bearing activities on her upper limbs. Push ups was one of the things on the fitness testing. The prosthetic allows her to keep her wrist joint safe. I fear that while she could do the pushup without it, it could cause injury to her wrist joint. She does have movement in her left wrist and we need to continue to protect that. The other item was curl ups (like sit ups but coming up farther). They showed me what Bella would need to do in order to be successful. We agreed that wearing the prosthetic would put some weight on her left side to keep her spine straight during the curl up.

It was a short, sweet meeting. In and out in about 30 minutes. Those are my perfect meetings, a good agenda that is stuck to and people who are focused!

I must say, while I was excited about the meeting, it bummed me out a little that we had to have a 504 in place for more action to be taken. This is precisely why I advocated for Bella to have a 504. Having it in writing somehow makes it happen, at least for us. Does everyone with a limb difference need a 504? No... I mean it's taken us until 3rd grade to "need" one... though in the back of my mind, I can't help but wonder if having one last year would have protected her from her neck/head injury.

Successful 504 meeting

Last week, we had the official 504 meeting. It happened at 7:30 am on a school day. This made it easier for all the parties involved to be there at the meeting. I sent over my schedule openings and then they worked with that. Thankfully my schedule was pretty flexible last week.

Here's who was involved:
Occupational Therapist from the school district (OT)
The school principal
Bella's classroom teacher
Me
The district nurse (there's ONE nurse for the entire district)
The school psychologist (apparently she's in charge of the 504's for our school)
Physical therapist from the school district (PT)
One of the physical education teacher's from her school (there's two)

Who knew so many people were involved? Not me. That said, it was a productive meeting and all parties were highly valuable for our situation. I'll give you the run down of the roles every one played so that if someone else is ever in our situation, hopefully they can understand it better.

The OT had called me earlier in the week to discuss my concerns. She also had observed Bella in the classroom prior to calling. I didn't know she was observing. Turns out Bella also didn't realize she was observing. She was pretty discrete about the whole thing it sounds like from Bella's standpoint and hers.

The school principal weighed in occasionally about what needed to be actually written in the plan and gave her thoughts on the plan as we went along.

Bella's classroom teacher explained what she had already seen and done as well as her plans for the year. You know those stubborn paper towel holders that need "two hands" to get the towel to come out. She put a stack of paper towels in a drawer below the sink for Bella. I love that she thought of that! She said other kids are welcome to use them too but it's there so she doesn't have to mess with it. What a thoughtful thing! She talked about technology moving forward. She discussed how the kids usually write the math problem that she writes then solve it. For Bella, she's going to photocopy the page (no copy right laws are effected) and then Bella can write the answer. For long writing, they can have her do talk to text... there were tons of plans she had! I was impressed with her forward thinking. Loved it!

The district nurse explained verbiage for the 504 to be effective. She helped to think of when to call me and how to notify me of problems as well.

The school psychologist read the words from the 504 legal page as well as noted our plans. She has to be sure Bella "qualifies"... to me that was a joke but whatever I get it. It's a process that must be followed to a T for it to be effective and be a proper legal document. She also helped keep us on track.

The physical therapist mostly just listened. He'll weigh in more when PE comes into play if we meet challenges. I'm happy he's involved so that he's aware of Bella and the fact that she may have some needs.

The PE teacher discussed the curriculum for the year. She talked about things that she's been thinking about, like hockey, pickle ball, gymnastics. She asked questions about her "sports arm" prosthetic and when and how to use it. I walked her through the process but Bella does most of it on her own. We talked about how once we meet some of those more challenging skills in PE that we as adults will come to a decision on having her utilize her prosthetic. Though I want her to be involved, there are some times adults just have to make the decision to keep her safe, physically, mentally and emotionally. We'll work with her too when it comes to that. Her PE teacher and the physical therapist talked about having her have the option to try some of those skills without her skills, like practicing holding a hockey stick before she's charged to do it in front of her class. I thought that was a great idea.

The meeting stayed on track and lasted 55 minutes. In my opinion, it was very effective. We are currently waiting to see the "finalized" 504 plan. I have no doubts that it will not be a problem.

Navigating the 504

Apparently creating a 504 is easy for some and more difficult for others.

We were initially told by our principal that a health plan would be a better option for Bella. I trusted her and agreed. Then, after doing my own research, and a lot of it, I disagreed. A 504 would legally protect her and give something in firm writing that would help us to help her.

We were told that "if she qualifies"... I'm not sure how she wouldn't "qualify". If you read the legal language, she "qualifies"... Here is what I sent over to her school: According to the Dept. of Education website, the exact wording is "cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal..."

She was born with a congenital limb difference, which is an anatomical loss affecting her musculoskeletal system. This is documented on my prenatal record, her health care record, as well as easily visible to all.

I'm thankful for the Lucky Fin Project, Born Just Right, and Camp No Limits. Those places are primary places of support for our family in times like this. The people that are part of those sites bend over backwards to help, give advice, give guidance and support. It's essential when navigating things like this. As an "experienced" mom of a child with a limb difference, I'm still learning.

Why am I sharing this with you? Because this is already a trying process. It's taken a lot of effort and energy on my part. I'm working hard to make this happen for Bella. We need to have some things in place to help her continue to be successful in school, without injury and without overusing her right hand. Remember, that if your child has ONE hand, that hand does 100% of the work, 100% of the time.

I'm not saying your child needs a 504 just because they have a limb difference. I'm saying that my child does. She had a neck injury last year at school that could have been prevented. She also has complained over some soreness in her right hand, palm and fingers. I want to be sure I'm doing what's best for you. She's almost in third grade and so far, we've made no adaptations in school for her. This year, there will be some changes. This year, we have thought about some adaptations that will keep her safer and also keep her right hand in good order so that she doesn't cause injury at a young age. Any pressure we can take off of her right hand, we will. Talk to text is something our school utilizes currently so I'm hoping that she will be using it more so save her hand. That's something that can be "built" into our 504.

I want to do anything I can to help our community as well. Our official referral was sent over and now we are waiting once again. I'll keep you posted on the process as I find things out. If you have any questions, comments or advice, feel free to share! I've had a hard time finding 504 information for kids with limb differences. Most of the information that I search is popping up with kids that have ADHD.

Be the advocate

To say I'm frustrated is an understatement. A week ago, I spent over three hours on the phone with Scheck and Siress, Shriners and insurance. We've had one appointment at Shriner's and several at Scheck and Siress, this means that I've driven to Chicago and back at least four times for appointments. I'm lucky that I've been able to work these appointments around my work schedule and that I have days off during the week.

According to many parents in our support group at Camp No Limits, Scheck and Siress should have kicked the prosthetic bill back to Shriners. That didn't happen. Parents told me to talk to them both. When I got home from CNL that's when the calling began. Endless messages, calls, return calls, follow ups, more calls, more time, what felt like a lot of wasted time going around in a circle. My head was spinning and I felt defeated.

When we went to Shriners, we were not told that we would be referred out to someone else (in our case Scheck and Siress) to complete the prosthetic. As far as Shriners was concerned, they were done with us until we followed up after her final fitting. As far as Scheck and Siress goes, they made a product and wanted to be paid. I felt deceived. If we would have gone to her pediatrician here, she could have done the same thing the physician at Shriners did... wrote a prescription for a prosthetic due to her missing her left hand, a congenital anomaly. Instead, we drove 6 hours round trip for them to do it and then send us somewhere else. We could have brought the prescription back home to a prosthetic company that was closer. Instead, Shriners told us to follow the Scheck and Siress rep that was IN our appointment.

Please understand, I'm not bashing either. I'm simply telling you our story and our situation so that other parents in our situation can understand. I hope that this helps others to not be in the situation that we've been in recently. I hope that it can help one family to understand the process a bit better. It's not an easy one. I hope that I can help just one person have a process that's a bit easier than ours.

We are happy with the prosthetic that was created for Bella and it is serving our purpose. Our prosthetist at Scheck and Siress really worked to create a prosthetic that would work for Bella. He was nice and easy to work with. He listened to our thoughts and concerns and hers as well.

We are happy with the physician at Shriners. He didn't do anything "wrong". He simply gave us a prescription and wrote his notes in a way that allowed insurance to see the value of a prosthetic for Bella. This helped us and her to receive her prosthetic.

In the end, this has left us with about $850 out of pocket to Scheck and Siress.

Where does the round robin come in? It comes in because Shriners SHOULD have covered the cost IF they have POPS in their hospital (POPS is the prosthetic, orthotic, place there). Shriners in Chicago recently had POPS fully up and running... one month after our initial appointment. Why didn't they tell us this when we scheduled? "Hey if you wait a month, we can make her prosthetic right here in house and you'll save a ton of money"... it's too bad that conversation never occurred.

What are we finding out? We are finding out that FUTURE prosthetics will be covered IF they are made AT SHRINER'S. We are also finding out that not all Shriner's run the same. They are all different and they don't seem to streamline the process from one location to another.

I spent another hour on the phone just this week, advocating for us and for Bella. They are taking our situation up to the head of the hospital at Shriner's Chicago to see if there's anything they can do to help us financially with the cost of her prosthetic. Each day we live and we learn. In the past few months, I've learned that I will advocate for Bella's needs to the ends of the earth. I will continue to fight for her needs, even if that means exhaustion on my end. Today, I'm mentally and emotionally exhausted. My fight for her doesn't end today. I won't back down, I will continue to be there for her and be her voice!