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. 

Most people are good

Have you heard the Luke Bryan song "Most People Are Good"? It's one of Bella and I's favorite songs. It's a great song!

"I believe most people are good and most mama's oughta qualify for sainthood...
I believe this world ain't half as bad as it looks. I believe most people are good."

If you ever see us jamming out in the minivan, it very well might be to this song. We blast it!

Here's the thing, there's so much bad in this world but what if, just what if we spend more time focusing on the good?

I reached out a few days ago to the founder of the Lucky Fin Project, Molly Stapleman, about music and a recorder. Bella's PE teacher this year mentioned that in the second semester they do recorders in music and she was thinking about how Bella would do that. (Side note: I love that she's thinking about Bella and how she can help her or what might help her even if it's NOT a PE thing. That's amazing!) Molly is an amazing advocate for children with limb differences. Hello she founded the Lucky Fin Project! I've followed her since before Bella was born. I should add that I've never actually met her in person, someday though, someday!

Molly offered to send us a recorder for Bella for FREE! This might not seem like a big deal to the rest of you. However for a kiddo with one hand that just wants to do everything that everyone else does, it's GIANT!! I was brought to tears when she said she'd send one and then said it was free. I offered to pay and she said no. Who does that? I'll tell you who, Molly does!

The community for kids and families of kids with limb difference is nothing short of amazing. I know I'm super passionate about it. I might even annoy the crap out of people with my excitement but seriously, be the good there is in this world. Everyone should be a little more like Molly!

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!

On my agenda

It's on my agenda to make myself a shirt that says "Advocate like a mother". Really! Advocating is NOT for the weak. You need a big pair of....

All jokes aside, this whole prosthetic process can be really frustrating. REALLY frustrating! So yeah, I'm not backing down. I was chosen to be Bella's mother for a reason and I will advocate for her until she gets what she needs to be successful. 

After the kids got off to school today, I was having a moment. A moment of sulking, of missing babies at home, of homework struggles, of school struggles, bus struggles, missing my dad, struggling with my body, work struggles... just life was really feeling a bit rough. I was daydreaming about loading us all up in the camper and going on endless adventures. Lofty goals, I know. 

(camping earlier this summer)

In my moment, I decided I was going to call insurance just to ensure that they received the request. They haven't. That's a joke right? Wrong. They had nothing on file from anyone regarding a new prosthetic... ugh. 

 I have worked in the medical field for 16 years and nothing frustrates me more than the medical field. In all seriousness, it can be a like you are circling the drain waiting and worrying. I remember back to when my mom had cancer, they did all the testing then it was hurry up and wait. There's no waiting with cancer people, run those tests and let's kick ass and take names! Thankfully my mom did just that. What's a mama to do when she finds out that basically we are still sitting at square one. You call Hanger to find out what's the hold up. I did just that and they are sending things over to our pediatrician today. She will then write a prescription for the prosthetic. The funny thing about all of this is that our pediatrician has NO other patients with limb differences or amputations, just Bella... It's safe to say she's really educated on the whole thing *rolling my eyes*. Thankfully she's a really smart woman and will figure out what she can do to get Bella what she needs. I'll expect a phone call early next week from them. 

Now we wait... I hope your patience is better than mine! 

504 meeting

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

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

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

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

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

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

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

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

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

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!

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.

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. 

504 complete!

Just like that our 504 is complete! It was way more painless than it was initially made out to be. I think because I reminded the school that I have the ability to be at school for 3 days a week until the 504 took effect. That might have helped... maybe not... but it sure seemed like it was quick.

Our 504 is very basic at this point. My goals were to keep her safe and to keep her RIGHT hand protected. It is the hand that she will use for 100% of things throughout life, so minimizing discomfort or distress on her right hand is essential. So here are some of the keys of our "accommodations" so far:

• Consultation between the PE teacher, the district PT and myself quarterly (this allows us all to think of body mechanics, safety and ideas to help her)
• Allow an opportunity of pre-teaching of PE if she were to need something different (meaning she could try the adaptations without the stress of her peers observing for the first time)
• Close proximity to PE teacher during activities that require strength and balance of upper extremities (this helps keep her safe and helps the teacher be more aware of her)
• Option of technology (there are tons of options for voice to text, word prediction, see saw, etc that will help her when it comes to writing for lengths of time)
• Copies of board work (so when a teacher writes a math problem on the board, instead of Bella having to write it then do the problem, she will be given a photo copy of the board work, so less writing for her)
• Allow more time for activities of daily living (buttoning, zippering, changing to outdoor gear in the winter) 

Understand that a 504 is protected through FERPA so her school can't go talking to anyone about this. Why am I sharing it here? Because when I was trying to find out info as a mom of a child with a limb difference, my search came up pretty empty. It was frustrating. I want other parents to not have the frustrations that I felt.

Don't these seem basic? To me, yes, but to others, not so much. All of these things come back to safety and limiting fatigue on her right hand. After talking to our friends at Camp No Limits this passed summer, we realized that we could do more to help Bella be successful in school and not have struggles. I'm thankful for a certain mama for encouraging me and almost pushing me to help my child! It takes an army to raise kids and I'm happy to have so many friends helping!

I actually have a meeting with her PE teachers tomorrow morning to discuss football. Her PE teacher requested that I meet with them so we could do some brainstorming together. Love this collaboration! I think it helps us all be on board for getting Bella what she needs to be successful and not have struggles due to her limb difference.

Is this all inclusive? No. As the years progress, her needs will change. We'll meet yearly to discuss her previous 504 and make changes. I can also request to meet to make changes sooner if needed. Likewise, her school/teachers could ask to meet with me for changes. This helps to be sure we are all on the same page for Bella. We will all learn as we go!

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.

Pool friends

Happy Monday! The first day back from Camp No Limits is always a little let down. No friends knocking at your door. You aren't surrounded by your group of people that get you. Your circle is now back in their part of the world. You are left to fend for yourself. Today, I worked out and then took the kids swimming to get their mind off of the disappointment.

Bella instantly found a friend. Adrianna and Bella were both swimming around in the pool then started playing together. They were  playing in the pool, splashing, kicking, going under water, jumping in and then holding hands and jumping in. Adrianna asked Bella about her hand. I couldn't hear her but I could see her. I watched as Bella lifted her left hand above the water, showed her, they talked and then begin playing again. I watched as they sat on the side of the pool and Adrianna HELD BELLA'S LEFT HAND and they jumped in! It was so naturally, it happened so quickly. Then it happened again.

My mama heart melted. I had taken a break to sit at the side and boy am I glad I did. It allowed me to opportunity to watch this sweet moment happen. My heart was bursting with joy. I'm not sure if Bella's still on her camp high or what. I'm not sure if Adrianna just has a sweet old soul or what. I will tell you that I'm sorry I didn't take a moment to tell her dad about the moment I witnessed.

Life happens so quickly. I was in the moment. My phone was tucked away in my bag. Luca was on my lap and I was rubbing Grayson's belly as he sat next to me. I'm so glad this moment didn't pass me by. I'm glad I got to watch even if I couldn't hear.

Adrianna's dad, if you are out there, please reach out. I'd like to get our girl's together again. Pat your daughter on the back, commend her for being a curious little person that didn't offend my daughter, hug her tightly and know that you are raising her right. If you happen to know a fire fighter that works on the north side of Milwaukee with a daughter that is 8 and a son that's about 2 that was swimming at the WAC in Brookfield today, please have him reach out to me!

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.

Denials

Our insurance hasn't been the best when it comes to getting Bella the things she needs. It feels like we are constantly jumping through hoops when we are trying to get things that we think she needs or benefits her. Currently we are STILL working with Hanger and her pediatrician about a prosthetic. 

Her pediatrician isn't well versed in limb differences which can make it slightly difficult to get the resources that we need. This means that I end up educating her pediatrician on the resources we need and then showing her why they would be beneficial. As everyone knows, those pediatrician appointments aren't that long and don't leave much time for discussion. Which isn't a big deal for most but when I need to do some education about resources and needs, this can create an issue. 

 Shriners is an amazing resource that we connected with years ago. At that time, we found out that there weren't really any immediate needs. Bella didn't want anything or find anything that she felt would be useful. Shriners was one of the most amazing hospitals I've ever encountered and that's saying a lot because I'm a nurse that traveled for some time! I opted to reach out to them again due to the issues we are currently having in PE class. We have an upcoming appointment at the end of this month. I was shocked that we could see a specialist so soon! Who's in the Chicago area? Message me if you are, maybe we could do a limb different meet up while we are there! 

Back to PE class, the teacher wants her to be independent and we do as well. Remember how I mentioned that we talked to our friend, Keegan. She had some amazing suggestions about how to help her be independent and be self sufficient without hurting herself. Again, people find those resources, use them! Keegan is an invaluable resource to us, both Bella and me as her mama. 

Stay tuned, until the end of the month!

Adaptive Bike Fair

Today, I'm pulling Bella from school a bit to attend Emery's Adaptive Bike Fair. Sometimes you have to treat things like this like they are as important as a doctor or dentist appointment. They don't happen every day... actually there's NEVER been one in the 7 1/2 years of Bella's life. I sent her to school in the morning, I'll pull her around 10:30 and we'll head down there. We'll spend some time with all of the kind folks who have donated their time and learn a thing (or ten!) on how we can help her.

Bella is SO nervous on the bike even with her training wheels. We tried to push her at Camp No Limits this summer to try and she was absolutely against it. Now that the weather has been nice here (what the heck, in February!) the boys have wanted to ride bikes. She rides along, usually screaming at me to slow down and not walk so fast. Yes, I said walk. Why do I walk? Have you ever tried to ride a bike with 3 kids? Luca likes to look at everything in site and occasionally run off into the grass or into a mailbox. Grayson speeds like a lightening bolt. Bella freaks out at EVERYONE to slow down... so yes I walk! Currently, it's far from enjoyable. It's like having someone throw balls at you and you are trying to dodge them but you can't, they just keep hitting you. What can I say? I'm honest!

See that stubborn face? 

So full of personality!

Date day with mom... and clearly a mind of her own!

I'm proud that she's stubborn and passionate. Really she comes by all of that naturally, Ryan and I are both stubborn and super passionate about things. So for her, she's passionate about NOT riding the bike! Which I totally get, not every kid is a bike rider. I'm A-okay with that. What I don't want it to be about her limb difference. I want her to ride her bike if she wants! I want her to feel confident in her ability to get on the bike and go IF SHE WANTS! If she doesn't want to, then that's fine. I want to her to know that I'm stubborn and passionate about helping her in any way that I can. This bike fair, is one of those things. 

Yes, I'm that mom. I'll pull my kid out of school for a life experience. To me, it's worth it. It's worth the couple short hours she'll miss. It's worth it to help her be successful in other ways besides in the classroom. It's important that I give her every possibility that others have already. I have no idea what it's like to go through life with only five fingers. I can only hope that when she's older that she'll realize we did everything we could to help her.