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

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!

Limb difference facts

The cost for an upper limb prosthetic varies by vendor and your insurance coverage. According to my research, they can cost 3,000-90,000. Bella's cost about 8,000.

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.

Bike victory!

Like I said in this post every day is a new day. We went on a play date yesterday and there was a strider bike that Bella decided she wanted to try.

"Mom, this isn't that hard!" I smiled and watched.

"Mom, we should take the training wheels off of my bike." We had a little conversation about how she first needed to work on her confidence and comfort so that bike riding was fun. Once that happened, we'll take the training wheels off.

Last night when we got home, Bella wanted to go on a bike ride. The boys were losing their minds one at a time so I opted to stay with them and have Ryan and Bella go. She came bursting into the house when they returned

"MOM, come watch me! Watch HOW FAST I CAN GO!" she was beyond excited. Fast for her is different than fast for Luca (his whole life is at a high speed level!)

I went outside and watched, I videoed and took pictures. I told her how proud I was of her. She talked about how she felt confident and comfortable.

"Mom, I'm getting WAY better at this. I feel so good riding my bike. It's fun and I feel comfortable now!" I was proud. I was proud that she had initiated bike riding, that she initiated speeding up a little, that she didn't get off and pull her bike... that she persevered and kept going.

Proud mama moment, proud daddy moment and most importantly, she was proud of herself!

Camp No Limits- The last full day

The morning ran the same, breakfast, energizers, OT/PT, life skills and sibling groups, lunch then peer support groups. During OT Bella got to try some other prosthetics, which was really fun AND she got to test out the i-limb. Can I mention that the i-limb costs $90,000?! Holy batman. It was really interesting to watch all of the upper limb difference kids try it. Bella was able to trigger it perfectly to get the hand to open and close... to which her response was "This will be my next hand!". Lord help me! I know there are grants and other programs that make this sort of thing possible. If she continues to use her sports arm, then we may pursue something more.

(Hungry hungry hippos, human style!)

Next up, slip and slide. This was insanely fun! Who knew?! We watched campers, staff, volunteers and parents go down. The facial expressions while watching at the bottom were hilarious! I know you are dying to know if I went down it... you bet! I mean it's not every day that theres a slip and slide that's big enough for an adult. Ryan didn't go down it. Loser :) I'd be lying if I said I wasn't afraid for my life while I went down. I did slide off the end and into the grass. It was quite fun and the kids are sure to agree.

Water front activities were next. We found out that Camp Cross doesn't have a provision in their contract for stand up paddle boards which meant that an adult had to be on the paddle boards when someone that was under 18 was using one. Bummer for the kids because they really enjoyed it. Next year, Mel talked about building this into our Camp No Limits programming. However, if you know someone in the Idaho/Wisconsin area that would come to Camp Cross and do adaptive sports, we could have a whole day of adaptive water front activities! Please connect them with me if you do! Email me

The last night is always a slide show, talent show, and dance. Honestly, I want to cry every time I see the slide show. There are so many moments that other people capture of my kids or other kids that make my heart melt. Watching ALL of the kids at camp grow in just a few short days is worth every penny. They make tremendous growth in activities of daily living, being more effective with or without prosthetics, running, walking, buttoning, pony tails, shoe tying... most of all, the amount of confidence they gain in this time is worth a million dollars.

The talent show... oh dear Lord where do I begin... with this I will share one photo before I tell more.

Please tell me that you didn't laugh? I about died a million deaths! What good sports these guys were! 

Shine's hair shop was a big success. The "customers" left with lip STAIN, moles, mascara and who knows what else. The best part of the talent show is seeing the kids have SO much confidence to present something that they are proud of or be creative. I love it! Not to mention, I loved that Ryan was willing to put on a dress, witches hat, wig and feather boa all for his daughter. I got a good one!

They finish the night up with a dance. By this point, Bella was exhausted. She's our girl that has no problem saying when she's ready for bed. About 45 minutes into the dance, she asked to go to bed! It was fun seeing all the kids just let loose and dance around. Even parents and volunteers got in on the action. Truly no judgement, which is the best part of the whole thing! 

Bike battles

Each day brings different challenges and battles for each of us. Each day is a new day, we can decide to pick ourselves up and carry on or to sulk. Today, Bella decided she was going to feel sorry for herself. Everything was wrong.

The boys rode too close.

The boys rode too far.

Daddy pushed her too hard.

Daddy told her to go faster.

Daddy gave her encouragement.

Daddy didn't give her enough encouragement.

The bike seat was up to high.

The bike seat was too low.

The bike basket was bumping around.

Her training wheels were too wobbly.

I adjusted her training wheels too much.

Life sucked big time. The bike sucked big time. We all sucked big time. Today was not her day... we'll try again tomorrow.

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!

Face your fears

Earlier today I mentioned going a  bike ride. There was lots of excitement and everyone agreed. Should I mention that riding bikes with kids is like waiting for a train wreck to happen? No, really. Usually there's crying, screaming, crashing, cuts, bumps, bruises, more crying and frustration by all parties involved. Imagine all that times three...

One example: riding down the street... 

Kid one- crashes into a grass ditch and refuses to get back on the bike.

Kid two- is actually pulling their bike and not riding at all

Kid three- driving around like a wild drunk, crashing and doing it again... faster

(Pre-bike ride today, super excited, can you tell?!)

That sounds fun, right? Come on, doesn't it make you want to bike ride every day? Yeah, me neither. So for awhile, when we biked, I walked.... while ONE kid rode. This saved us all a little sanity. That can only last for so long though, so tonight I offered while praying to Calgon, God, Buddha, and anyone else that might be listening. 

Bella was SO excited, then I made her grab her new sports on with the bike attachment. Then she cried. 

"Mom, I do not want to do this. You are SO mean. Why are you forcing me to do this? You never listen to what I want. You are the worst mom ever. I don't even want this thing (pointing to the prosthetic). I never even asked for a bike hand. You wanted that, not me. I ONLY wanted the one for tumbling. UGH! I'm not going"

"Uh yeah you are. I'm sorry that you are not happy but you are trying this. I'll be right there to help you but you are wearing the prosthetic for ONE block."

More tears and frustration. "FINE but ONLY for ONE block!" 

"Sounds good!" she doesn't get a choice to brush her teeth or comb her hair because as her mother, I know best. She was not getting a choice about at least entertaining the option of trying the bike hand for one block. It's not like I was asking her for something crazy. It was completely reasonable and how would she know if she liked it or not if she didn't give it a chance.

Away the boys, Bella and I went down the street. Fifteen minutes later, we were three houses away. Yes that was NOT a typo, three houses people... HOUSES, not blocks! Bella was barely pedaling. The boys... see what I said earlier, they are those kids! I kept encouraging and giving support.

"You've got this Bella!"

"Good job pedaling, use your strong legs!"

"Go girl"

"You've got this!! Keep going!"

"Look at you! Nice work pedaling! You are doing great!"

"Keep it going sister!"

"Deep breath in and deep breath out, keep trying"

"Mom, I'm trying. I'm facing my fears. I'm really, really afraid. I'm scared I'm going to fall. I'm afraid, what if I fall? I'm trying hard mom. I'm breathing in and out. I can do this. I can try new things." She said to me and my heart took a hit. She was facing her fears of bike riding. She's unsteady even on training wheels. She's nervous and afraid. She needs a lot of encouragement. She was getting it. All that really mattered was that she was trying. 

About that time, her dad pedaling down the street on his bike! She was so excited. He rode up to the boys and stayed with them and would pedal back down by us. Slow and steady we were getting there. All of the boys in our crew were extra patient. 

At one point she asked to take off her prosthetic and I agree to let her at the end of the street. She didn't argue and kept going. At the end of the street, she stopped and asked if she could take it off. I helped her then stuck her prosthetic arm under my arm and we both rode off. About two turns of the pedal she piped up. 

"Mom I actually think it's easier with the prosthetic. Can you help me put it back on?" I did. I was actually happy that I had pushed it a little harder than she might have liked. She realized that it helped her be more steady. It helped her to have full control of the handle bars. 

Around the corner we went, slow and steady. We pedaled back in the driveway. I stopped to tell her how proud I was of her and that she did a really great job trying so hard. She really faced her fears and grabbed the bull by the horns. I shared with her that I was so proud that even though she was afraid, she still tried. That I was really proud of I told her, for trying! 

As we parked our bikes, she had one more thing to say...

"Mom tomorrow's my birthday. Do you think we could get me a new bike?" I simply smiled. We'll see!

Round Robin

Today, I spent three hours on the phone with Scheck and Siress and Shriners. Three hours of my life that I'll never get back but I hope that they both (or at least one of them) see the light. At Camp No Limits, during one of the parent support groups, I learned typical process for prosthetics at Shriners. I also learned that our process was far from typical.

Here's what happened... when we picked up the prosthetic, we were told that we had to pay our 10% of the prosthetic BEFORE it was released to us. We paid over $530 for the prosthetic and were on our way. There is another $394 sitting in limbo to see if we met more of our deductible. The original bill for the prosthetic was around $9000. I swiped my credit card and was sent on my way with a sports arm for Bella.

Here's what SHOULD have happened according to what I learned at Camp No Limits. Scheck and Siress should have billed insurance, insurance should have covered "their" portion. The remainder should have been billed back to Shriners for them to cover the remainder. That did not happen. Hence why I spent so many hours on the phone trying to get this situation resolved.

Some of you may be saying "Well it's only $530"... you are SO right, it's only money. I can't take it with me when I die. However why should my daughter suffer because she was born without fingers on her left hand? Why should she have to make adaptations in a world that was built for two handed individuals? Why should she not be able to be a "normal" kid, playing, doing cartwheels, riding bikes, doing PE class?

Remember back when she had the fall in PE class due to her limb difference? Yeah so that happened. It could have had long term ramifications, I'm so thankful that it did not. However, let's play devil's advocate. She only suffered in pain for seven days because she didn't have the balance due to her lack of fingers, causing her to fall and severely sprain her neck. This left her out of gym and recess for an entire week. To a kid, those are some of the highlights of your day. It could have left her paralyzed, with a head injury, a brain injury, to be catherized for urine... it could have changed our lives in a much different way. Could've but it didn't. Yes, this is ONE reason she needs a sports arm.

I teach pediatric nursing and the JOB of children is play, just like you have a job. My job is teaching nursing, Bella's job is to play and learn through that. This is one small example of how she can't play due to her limb difference. I would not allow her to do another hand stand until she received her prosthetic and be balanced... however, her injury also has made her have a fear of head stands. She recalls the pain, the missing out on being a kid, missing out on recess and sitting out of gym class. She talks about it, she doesn't want it to happen again.

Camp No Limits once again made me think of things and how Bella is affected. This mama bear is always working to protect her cubs. Today, that meant advocating for her for many hours on the phone. They can come back and say no... and they just might do that. In the end, I stood up for my girl and I won't back down. Not today, not ever.

Insurance stuff

Post picking up Bella's prosthetic, I called our insurance to talk about finances a bit. In the conversation, the lady on the phone asked why we had not gone to somewhere closer. She said "Hanger is very close to you and you could have gone there. They are an in network provider and would have been covered."

I proceeded to explain to her our experience with Hanger. Hanger had ME call our pediatrician to discuss with her Bella's needs and my concerns regarding Bella's limb difference and safety when it comes to sporting and gymnastics activities. I did talk to her and she asked the Hanger call and talk with her about the different options. The staff at Hanger told me that according to insurance, they couldn't do that because that would be considered soliciting. I asked how to educate her on the options and was left with not much information. Since when is it my job as her mother to educate the pediatrician? Surely there was someone more educated on prosthetics and options for Bella than me! I knew of what could be helpful for her but that by no means means that I am the expert!

There are several options for prosthetics. I am not well versed on any one prosthetic. I know a little bit about the few I've seen at Camp No Limits or that friends have used. That's the extent of our experience. Just because I've seen them, does not mean they will work for Bella. This is why I was consulting the experts.

I then talked to Hanger again after our appointment at Shriners. I asked them to get our notes from Dr. Ackerman. I left several messages with NO return call. Can you sense my frustration here? Did they not want our business? Do they not have time to get her records? What is the problem here?

The weird thing is that last year, Hanger provided Bella's scholarship to attend camp. I couldn't be more appreciative of that! I was disappointed that although they provided our scholarship to attend Camp No Limits, I was being left with a bad taste in my mouth after their service to my child as a customer and patient was neglected. Why would they provide a scholarship and then not want our business? I was confused and I still remain confused.

In the end, our business went to where Shriner's referred us to start. The problem with that is the location is a 3 hour drive each way (Ugh, Chicago traffic how I hate thee!). Scheck and Siress provided us with a prosthetist that was an expert in Bella's needs. He presented options and talked about how each would or could benefit her. In the end, we went with what insurance would approve as well as what his recommendations stated.

Why am I sharing this all with you? I'm sharing it because as a parent of a child with a limb difference, YOU are your child's biggest advocate! You must be the voice of your child. You must not back down. You must speak up to get the needs of your child met. You are the only one that can do this. Know that you are enough. You are doing the best job you can for your child, though at times, it may not seem like it. At times, you may feel like you've been knocked down. Pick your ass back up and prepare to be strong once again! You've got this, I promise.

If you feel like you are struggling, know that there is a community of others out there to help you. I reached out to Mary (CNL Director) and Keegan (CNL Mentor) more times than I can even remember. Each time, they helped me, they encouraged me, they made me feel good about what I was doing for Bella. They lifted me up. I'm here for you. Reach out if you need me, I'll help you! No one should struggle alone. Reach out to your community!! It takes a village my sweet friends.

We have a prosthetic!

When I say we, I mean Bella... I mean it's hers but it's ours too, especially mine since I've worked my tail off on this to make it happen and make it happen right. This girl has no idea and that's a-okay. Someday, she'll appreciate me even more... or I can hope.

Today, we drove to Scheck and Siress to pick up her FINAL prosthetic. She has a terminal device and two adaptations. This means nothing to you "non-prosthetic" people. It means everything to her. She's made me promise to keep it a secret and not post ANY pictures until she shows it off at Camp No Limits, which happens on Thursday. The suspense is killing me, I so badly want to share! My promise to my girl means more than that though, so you'll have to wait. You can call her to find out more :) She loves texting, FaceTime and snapchat... all via my phone of course!

(She started young)

Thursday, Camp No Limits Idaho happens. I'm dying inside to get on that plane and go. Camp is like Christmas for me. I get to reunite with people that I love and meet new people that I'll grow to love in just four short days. It's life changing every single time. My heart grows ten fold and it's one of the happiest four days of the year for me. I hope that my kids feel the same.

Be on the lookout for LOTS of updates coming soon. Maybe I'll see if Bella wants to blog about getting her hand. We can at least post for one to release on Thursday night after all the CNL friends have seen it first :)

Upper limb prosthetic friends, be sure to bring your attachments for your sports arms so she can check them out. I can't wait to see all that she learns this year. I wonder if she'll spend any time with us at all. Usually she wonders off with the girls and I see her on Sunday to pick her back up. The joys of camp!

(My how she's changed in a year!)

So yep, in her bag, all set to go are the prosthetic parts! I'm dying on the inside that we actually have them in our house! FINALLY!

Hurry up... and wait...

I honestly thought we were going to pick up Bella's prosthetic on Wednesday. Much to my disappointment and hers, it was another fitting. Apparently there are several fittings before she actually receives the final device. Who knew? This stuff takes time people, time that we don't have!

Why don't we have time? Camp No Limits starts July 14th for us! While that seems like another 2 weeks away (because it is!), weekends don't count when they are working AND a holiday falls between now and then. I'm not the expert in prosthetics but the amazing thing about camp is that there are TONS of experts! There are OT's, PT's, limb different adults, youth and kids, parents who can help us and people that can influence Bella's use of her prosthetic in a way that Ryan and I can not. Let's be real, kids prefer someone other than their parents at certain times. The experts are not in our neighborhood or even our city. The experts are truly at Camp No Limits, yet one of the many reasons we attend yearly.

They did a fitting yesterday and made a few adjustments. Then it gets sent out to another place. There they mold her final prosthetic which is much lighter than the one she tried. She picked a fabric that they'll mold into her device too. The two pieces that go on the end of her terminal device weren't in yet either. So we wait...

While we are going through Scheck and Siress, Shriners also wants to see us when we pick up the final device. The problem with that is that Shriners only has appointments with Dr. Ackerman on Friday mornings. Friday's I work all day, as does Ryan. Not to mention that we only have one more Friday between now and camp (not counting tomorrow)... AND they don't think our device will be ready by that Friday. I THINK I have them convinced to have us come down on the Monday prior to camp, which also happens to be my day off. Then we can come back after camp on a Friday when I'm actually off to follow up with Shriners. Then if there are adjustments that need to be made to her prosthesis, we can also schedule at Scheck and Siress too.

So... we wait.

Prosthetic update!

Wednesday, Bella and I finally get to go to Chicago and pick up her prosthetic! To say we are excited might be an understatement. We'll probably test it a bit there then head back. I'm sure what I'm thinking in my head will be an hour long appointment will take much longer.

This is the "pick up" appointment. Tomorrow is when we pay for it. I'm so thankful for good insurance! We'll only be eating ramen for the next month :) Jokes aside, our out of pocket is 10% which comes out to just over $1,000. Why am I telling you this? Because nothings free. Not only is the time and headache of making all of these appointments then follow up, there's also figuring out where you'll pull the money from. It will also give us the opportunity to budget this in the future, knowing that she'll need a new one about every 18 months-2 years. So far, insurance only approves a "new device" every 3 years. That's a battle I'll start fighting later. I think it's important for parents of children with limb differences to also realize the cost. I thought when you went through Shriner's that things were cheaper. For us, we still have a co-pay at Shriners as well as our location doesn't do prosthetics, they contract that out. So that's how we ended up at Scheck and Siress. Neither here nor there, there's a cost, that if you are like most

We'll plan to pick it up then come home and really put it to use. Really test it out and be sure there are no weird rubbing places and that she has full opportunity to take full advantage of using it so we can follow up, hopefully before we head to Camp No Limits. She'll have one more appointment at least to follow up on fit.

This is pretty much perfect timing with Camp No Limits right around the corner! Camp will give her the opportunity with people that are similar to her to test drive the prosthetic fully. I'm sure there will be a number of people there who can encourage her and help her get used to using it for the tasks that she wanted it for.

So far, we'll all booked for camp, minus a rental car. Camp is quite a distance from the airport so we need a rental car to get from point A to point B. Then we need to pack, packing for 5 is NO easy task... I pack for 4 of us. That's a handful to be sure that you have everything. That's where lists come in handy!

I'll keep you all updated after our appointment on Wednesday!

Almost ready...

After stalking Scheck and Siress for weeks, I finally got a pre-approval letter in the mail from our insurance. When I called them on Wednesday, they still hadn't received the letter. Frustrating... so I faxed it over. I'm pretty sure that's what any mama bear when do when her baby bear has kept asking about it!

On Friday, Scheck and Siress called to verify that they also received the letter from insurance. The parts had been ordered and now we wait... We were told that once they were ordered they would be ready in 3-5 business days. What's a mom to do? Yes, call this coming Friday to follow up.

I did reach out to Camp No Limits friends to ask about the type of prosthetic. Being newbies to this whole thing, I wanted to be sure what they were ordering was really something that would be useful to Bella. I sent a text to Mary, CNL founder and director, and Keegan, one of the teen mentors who is one of Bella's buds (and mine too!). They were both able to verify that they thought it would work great for what we had in mind. Being able to quickly reach out to a trusted community is essential. I'm thankful that they both responded quickly! I'm beyond thankful to have them both in our lives.

Again, we wait. At least this time, we know exactly what we are waiting for and how long it SHOULD take... anything could change. I'll keep you all posted!

Back in the insurance loop

Here we sit, back in the land of the insurance loop. I heard from Scheck and Siress yesterday about the process of the prosthetic. Bella was casted for the mold when we were down in Chicago after being seen at Shriners. She was told that "it usually takes about 3 days to make the prosthetic". What does that mean to a 7 year old? It means that in 3 days she'll have a prosthetic. Not the case. We had to talk about how it takes time and we have to practice patience. Something neither her or I are that good at!

So we are here, waiting once again for someone with two hands sitting behind a desk to approve a prosthetic for our daughter. It's so frustrating. It's frustrating because that "someone" sitting behind the desk gets to decide what fits for Bella. They don't live with her, they don't see her daily, they aren't aware of her challenges and yet that person gets to decide what's best. It irritates me. I'd happily invite them into our home, into our world and into Bella's day. I bet they won't even ask. They'll approve or deny and be done with their day. While we sit here, waiting.

What does that mean? That means in about 2-3 weeks insurance will make a decision and Scheck and Siress will call to provide me an update on our situation. What did I also discover? Our insurance is decent. They are estimating our  deductible will be about $1000, which is 10% of the cost of the prosthetic. Something for us to keep in mind as we budget for our future and for hers. Something for other parents of limb difference kids to keep in mind as well.

I'll keep you updated as we are updated on the progress.

Shriner's update

Last Friday, was our Shriner's appointment. Our drive down is a little under 2 hours and we forgot Bella's kindle. Let me tell you she was thrilled about that (insert eye roll here!). However, it was a really good opportunity for her and I to chat about some things that are going on in her little 7 year old life. A good chance for mama and Bella bonding.

We made it to Shriner's and then checked out inside the hospital a bit. We did some reading, played with a little 16 month old guy who was also waiting, fishtailed braided Bella's hair and did some more chatting. We got called back and met with Dr Ackerman, Michael (from scheck & siress prosthetics) and a resident. Dr Ackerman agreed with me that a sports arm with a terminal device would be a good fit for Bella at this point in time. Did I lose you yet? The terminal device is the part of the prosthetic that goes on her left arm and then the "hand" portion is interchangeable... Why go this route? Because this will allow her a mushroom tip (which is used for gymnastics, handstands and cartwheels) and a bike piece (that can clip onto her bike but releases easy, this could then be adapted for tennis, baseball bat, hockey, kayaking)... It gives her some options.

Why not a full prosthetic that she can wear all of the time? I want her to have a purpose, right now she does most things just fine. After her neck injury in PE is when I decided that she should probably have something to help prevent further injuries, to her neck, her wrist, her elbow or other injuries that could occur due to her limb difference and the length difference in her arms. IF later she decides that something would be beneficial ALL of the time, then we'll go that route. However, for now, this is a start.

Why Scheck and Siress? Shriner's in Chicago sends out their prosthetic needs to this company... Why? I'm not sure. What I am sure of is that they have great communication with Dr Ackerman which will help to get our insurance on board. This is one of the main problems we have in Milwaukee. Our pediatrician isn't well versed in prosthetic or limb differences and our needs, which means she would have to communicate better with Hanger. Hanger can't call and talk to her because then insurance would deny our claim because "they are trying to sell her something"... their words, not mine. That's one of the main reasons we went to Chicago, to get a hold of experts. Dr Ackerman is just that, an expert in amputations, limb differences and the needs related to such.

What about the cost? Before I get into this, I'm going to get on my soap box. Here goes. Why is it that someone with TWO hands gets to sit behind a desk and decide what MY daughter NEEDS and if it is appropriate or not? Why is it that this person gets to decide if it's a NEED or a WANT? Why should Bella have a harder time doing handstands or cartwheels because she was born different? We risk injury to her good limb from all of the extra stress that she places on that hand and those joints. The person behind the desk surely is considering all of those things right? Wrong...

Okay back to the cost. I stood at Shriner's and called to be sure Scheck and Siress was "in-network". It took me about 30 minutes to verify that is was and then we headed from Shriner's to their office. We have decent insurance. We've almost met our deductible. Once that is meant, we pay 10% and the insurance company pays 90%. This isn't too bad. The problem comes into place when the policy says the prosthetic can be replaced every 3 years, so then that means we'd  have to fight with insurance because she's a child and she's growing constantly so she will likely need something before the 3 years is up.

Why did I share the cost? I feel like it's important for other parents of kids with limb differences to realize there is a a cost, a significant one. We'll likely have to travel to Chicago 2-3 more times for appointments, that's time off of work and school as well as gas and wear and tear on my vehicle. The cost of the prosthetic as well and the things that go along with it are not cheap. The sleeve alone for the inside of the prosthetic (this helps decrease rubbing and ensure a good fit) is $500. Again, these are things that I as a parent of a child with a limb difference did not know or realize. As we move forward, these are things that we will keep in mind. Just some insight for those that are in our shoes.

I hope that this helps someone! I hope that you as a parent of a child with a limb difference can think about your child's needs as they arise and have some sort of understanding because of this blog. I hope those in the community can understand prosthetics a little better.