Helping friends

Bella has been a little sidekick for our friend, Amy at A Doll Like Me. She's BLOWING up on her gofundme campaign and is interviewing left and right! Amy asked if Bella could help out with sharing why having a doll like you is important and Bella, of course, has strong opinions about why! I really enjoyed being there and listening to them both speak. Amy is SO passionate about what she does and she's a one woman show. She's currently running the media, making the dolls, communicating with all of those interested, communicating with people about interviews. She might be the definition of insane currently, but we still love her! As for us, we are SUPER proud of her and happy to help! 

New Year, New Us!

The end of this year was mentally and emotionally exhausting when it came to this prosthetic thing. I've done a lot of video updates on Facebook because I just simply didn't have the energy to write a blog about the heartache. Then, just like that, magic happened.

RIGHT before the end of the year, I got a call from our prosthetist that he was 99% sure that we were going to get approval. Well, he was right! I called insurance to verify a couple of days later and was told the news from them. I had to pull myself together because I was driving and calling. It was emotional for sure. Those of you on Facebook, saw that emotional reaction a little bit later. I cried like a baby and the lady on the phone said "Isn't this good news?" When I explained what we had been through she was the sweetest mama on the other end. She mentioned she had 2 daughters and can't imagine having to wait on something like this and have it be out of her control. She had empathy and lots of it. It was like she was the person placed on that call for a reason.

I called Hanger to confirm with them that it was now in writing on our file. I was crying as I talked. The guy on the other end said "This is great news". I said I was crying happy tears. Yes I'm that woman! I cry when I'm mad and sad, angry, frustrated, happy, excited. Yeah I'm a mess :)

We picked up Bella's NEW prosthetic on December 26th! It was my mom's birthday too AND she and my step-dad got to share that with us. Thankfully because my mom took all of the pictures! It was better than Christmas and even Bella agreed. You guys, seriously, this is BIG! For a nine-year-old child to have such excitement and emotion about something like this was HUGE! She is a girl that is wise beyond her years with an old soul and she realizes things like this... Her face was BETTER and filled with more joy in the office than it was Christmas morning, I swear.

This is the only picture I took the entire visit! Yeah, I was soaking it all in! 

Here's the thing people, while this was an emotional rollercoaster for me, Bella didn't know any of that. She's nine. It's my job as her mama to protect her. She knew there was a wait because it was out of my control and that I was "working on it" but nothing more. I wrote the appeals, I called the insurance company almost daily since September when this process started. I cried at night after people went to bed. To have your child continually ask you "When is it coming? When can I use it again? How much longer?" was like knives stabbing my heart. I just wanted to make it happen yesterday! When it did, my heart was filled with so much joy watching her sweet little innocent face. 

I'll share our appeals letters with you here because you are welcome to tweak them to make them your own. Don't back down! Don't give up! Our kids depend on it! Our limb different and limb loss community depend on it! Show these insurance companies that this is important shit! Don't let them instill fear in you and IF or when they do, fight harder. 

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!

Just another day at the pool

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

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

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

"No, why?"

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

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

"Does it bother you when people stare?"

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

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

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

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

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

Nub tips

These little "cord keepers" are a life saver. I had posted on my Facebook page several years ago about needing something for Bella. Another mama offered to send me something to help with cheerleading. These little things are a lifesaver. We've used them for a number of things. Initially it was for cheerleading, putting one around the pom pom and one around her wrist and having them looped through each other. (Was that super confusing?!)

We've always kept some at the house for just in case. We take them camping and have used them for jump roping too. It's always best to be prepared and have some ideas just in case.

Recently, based on our 504 plan, the PE teacher reached out about hockey being their next section. Through this section, Bella would need to be able to put both hands on the hockey stick in order to have the most control. She had Bella ask for more "velcro things" and we had a meeting scheduled.

When I met with her we talked about her idea of Bella using her prosthetic and using the velcro cord keepers to wrap around her prosthetic as well. This worked super well for hockey AND for jump roping! These things are a must if you have a prosthetic or if you don't. Talk about multitasking!

Here's an amazon link with them, I purchased them at Walmart in the sewing section (who would've thought!)

Giving Tuesday

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

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

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

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

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

Our first meeting post 504

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

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

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

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

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

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!

My tender little heart

Yesterday was the first day of school, I'll share those highlights later. Tonight, I almost cried while listening to our Bella read about history. Blah, most boring thing ever to this mama. She had read me a book and I was reading her a book about President Truman. One line red "During his presidency, some Americans criticized him."

"What does criticize mean mama?"

"Hm... it kind of means like judge people."

"Like how? Give me an example."

"Bella your math is not that good, you really aren't good at math." She smiled. Then she stopped.

Deep in thought, she said "That's what Mike (*name changed for privacy) did to me last year. He criticized me all of the time. That's tough."

"Yeah that didn't make you feel good. It can make people work harder because they see it as a challenge OR it can make you sad because you are trying your best and they are hurting you."

"Yeah but here's the thing. It did make me work harder. It also made me be nicer to Mike. He needed that from me. You never really know what other people need. He needed that because you don't know if someone hasn't been nice to him or what his life is like at home. You just don't know. Being kind to him, showed him that I wouldn't criticize him back."

"Wow Bella, you impress me. That would have really frustrated me and I'm not sure if I could have been nice like you. I'm super proud of you for thinking about what he needs even it's hard for you."

Just like that, we continued reading. Then we stopped and snuggled. I told her how proud I was of her and how happy I was that she was my daughter. Proud doesn't even describe the full emotions that I feel for her grown up thoughts. When I grow up, I hope I'm more like her.

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.

Back to school, already?

Our back to school list is posted. I've already done some shopping. I might be slightly obsessed with getting the best deals possible AND buying some extra. I can't believe it's time for back to school. Part of me loves the routine, part of me is dying that this means summer is coming to an end.

I keep seeing parents post on Facebook about back to school and supplies. I'll share with you our back to school list.

Parents are seriously complaining about "50 pencils?" and "15 glue sticks". Really? I mean I found a 24 pack of pencils for $1, buy three and you are well over your 50 mark. Have you had a kindergartener AND volunteered in the classroom? Holy glue sticks. Kids leave the caps off, glue dries out. They also use it every day for gluing word work, it's a lot of glue people!

Why do I care? I care because are you bringing your negative attitude home to your kids? What sort of excitement are you creating? I never once heard my parents complain about back to school shopping or school supplies, not once. Here's the thing, your attitude wears on your kids. The good and the bad. They are watching you.

(Obsessed with wolves and beyond thrilled about his wolf backpack!)

My mom especially brought TONS of excitement for back to school. She ahh'd and oooh'd over our supplies and how fun it was to get new stuff. She made the process of packing our backpacks fun. Maybe that's where my love of back to school comes. My mom even makes it fun for MY kids! She offered to take them to buy a new outfit, lunchbox and backpack. She's crazy :) I promise that my kids are excited to get a "date" with her. Date days are the best days.


How much have I spent? So far, about $10 on each kid. I'm almost done. I still have to get spiral notebooks. My advice, start early, watch sales, buy what's on sale then wait for other sales, get a little each week.

Why am I sharing this? I'm sharing because it doesn't have to be a big expense. However, I'm mostly sharing because as an educator myself, don't we want our kids to have plenty of all of the tools that they need to be successful? Don't we want to arm them to succeed? Do we want them to have to worry about too many broken pencils or not enough erasers? No, they are kids. Excite them about education. Be the one that pushes them to do their best. Be their biggest support and the most positive energy in their life.

At the end of the day, 50 pencils should be the least of your worries.

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.

Camp No Limits- Day Two

I swear, each day of Camp No Limits gets better. You never want it to end. What's not to love? There are tons of new friends, some old friends, kayaking, paddle boarding, eating, crafts, games, swimming, exploring, learning, endless support... Yep, every single minute I love.

Each morning starts the same at camp. Breakfast around 8 am for about an hour then energizers. Energizers are energizing! You dance and laugh to start the day, do some core work, do some stretching, seriously we should start every day like this. It always brings a smile to your face.

After energizers, we break into groups. PT, OT, and sibling groups are the first groups of the day. Usually the upper extremity groups works on some life skills, like shoe tying, braids, pony tails, buttons, zippers, socks... I know the lower extremity groups work on running but I'm not sure what else since I'm usually hanging with Bella in the upper extremity group. This year at camp, Bella taught a girl, J., a tad bit older that has two hands, how to tie a shoe with one hand. J was more than attentive and really interested in Bella teaching her. It was so sweet to watch them both. Bella's passion about teaching and sharing how she does things. J focusing and determined to learn while being kind and warm to Bella.

Sibling groups are super fun, just ask our boys! They went kayaking, paddle boarding and who knows what else. I do know that the boys come back and really want to go back with the sibling group. They love every moment of sibling group!

After this is lunch, then peer support group. Again, siblings go off and do one thing. "Campers" like Bella go to a support group that us parents are allowed to attend. Parents go to another support group.  This is super helpful for all parents and it also helps you get to know the other parents. This year, I learned a ton from parent support group about prosthetic costs and such. I feel like every single person in the group is valuable and brings more to the group.

Next up for Idaho Camp No Limits, changing and water front! The waterfront is super rocky. They did say on the website that water shoes would be helpful and I almost laughed outloud. Water shoes and fanny packs go in the same category... seriously people, I'm so glad I bought some. The waterfront is super rocky and would have been pretty painful without water shoes. Mine were super cute too... or not... I mean can water shoes be cute? 

Bella also got one on one swimming lessons from Travis, he's an incredible dude! Bella ran down the hill earlier in the day yelling "Daddy" and it was actually Travis. They both have dark hair, big beards, board shorts and are built similar. She got all the way to him before she realized he wasn't her Dad! I knew from further up the hill but let her get all the way there. It was hilarious! Back to the swim lessons, Travis was a swim instructor for many, many years and he spent a chunk of time really helping Bella. What a great dude! 

Next up, changed, dinner then Human Clue. Apparently it's a Camp No Limits Idaho tradition. It was unforgettable. It was so fun and every single person that was involved had a great time. I didn't take a single picture because we were too busy trying to figure out which person committed the crime, where and with what. Super fun! 

The nights at all the different camps we've attended, ends in a campfire. CNL Idaho was just the same... except Mel melted all the marshmallows together so no one could eat them (JK Mel- we love you). Bella stayed up and we put the boys to bed. The beauty of the end of the night is that there are so many parents you've met that any number of them will watch after Bella so the boys can go to bed. There's also the "bigger" campers, like Sydney, Keagan, Jamie... and a number of others. Off to bed they went and she put some gooey marshmallows together and made a s'more. 

Day two did not disappoint, are you ready for what day three offered? 

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!

Big thanks to all of the volunteers!

A big thank you to all of those that volunteered for Camp No Limits Idaho. Volunteers can truly make or break a camp. They help with occupational therapy, physical therapy, sibling groups, energizers... I mean they help with everything! They take on whatever role they need to in the moment.

Thank you for being adaptable, open minded, compassionate, passionate, caring and kind. Your energy makes all the difference. You all should have seen the volunteers during energizers in the morning, they were all over the place! They danced, they encouraged other campers to dance and siblings too. They created such a great energy at camp for everyone.

As a mother of a camper AND siblings, I appreciate everything you did to help this camp run smoothly. Having the sibling programs makes it possible for me to be part of Bella's therapies and activities. It also allowed me to spend time in parent support group. Missy goes out of her way to have fun activities with the sibling campers! Without all of you, I'm not sure Missy could (or would want to!) handle our two boys in addition to all of the other siblings. Having volunteers helps parents to be more at ease and know that all the siblings are getting plenty of attention AND having plenty of fun! Trust me, the boys had a great time and were telling us all about the activities that you did with them. They truly enjoyed every moment of camp, just as they did in years past!

I enjoyed having you be part of the parent support group as well. As I mother, this year, I learned a tremendous amount about Shriners, insurance and cost of prosthetics. I received support and encouragement from so many parents and volunteers. As a pediatric nursing professor, this also opened my eyes up to life outside of the hospital world. It allows me to see that these kids live full, fulfilled lives with a variety of limb differences and amputations. It allows me to go back and share with my students the things we as nurses should be aware of when dealing with patients and families in these situations. I talked to so many volunteers who said the same thing. I hope this opened your eyes and you'll share this information with your colleagues as well. 

Thank you for pushing our kids. Thank you for lifting them up, for creating trust with them, for encouraging them. Dylan watched Bella use her prosthetic and having him watch her and ask questions meant a lot to her. I only mention that because I was right there when he was there. I know there are a number of you I haven't mentioned by name but that doesn't mean I appreciate you any less. Bella really enjoyed not having me there with her for every moment, Miss Independent. Having volunteers and people other than her parents push her is highly important!

You each really took the time to get to know the campers and talk to them. You created lasting impacts on their lives and our lives. From the bottom of our hearts, thank you!!

Arriving

The first day at a new Camp No Limits is always exciting but a little nerve wracking too. Did we pack all of the right things? What did we forget (because you know there's something!)? Who will we meet? Will this be the camp that we want to come back to year after year? Will this be like all of the other camps? What will be different from the different locations? How will the families be different? How many volunteers will there be? Will there be a sibling program? Will there be something new? What will Bella master this year? Where will we sleep? What will the food be like? Will there be any downtime? Will we sleep at all? What will it be like without Mary? Will we pick up with old friends just like before? How many new friends will we meet?

It's safe to say the questions that flood my mind are never-ending. It's also safe to say that after four times of attending Camp No Limits in three different locations that it's something I would be heart broken to miss. It's an experience like no other that's virtually impossible to put into words. That's one of the reasons that we've raised funds to send three other families.

Back to arrival day... we arrived late due to driving around the lake for a good hour and a half. Go figure. Not ideal but also not the end of the world. This is by far the most remote camp! You arrive at a dock, use your cell phone to call Camp Cross and they send a pontoon boat over to pick you and your luggage up to transport back to camp. We left our rental car, rode across the lake and took in the amazing views, while watching a bald eagle fly overhead.

Introductions were under way when we arrived and lunch was complete... only we hadn't had lunch! The kitchen was nice enough to be sure we all ate. Bella and  I stayed for introductions, while the boys all ate. Then we swapped. I inhaled because I didn't want to miss anything and Bella flat out refused and ate an apple instead. How dare I even ask her to come away from the group!

Waterfront activities followed. The "beach" is a rock beach. Some sort of water shoes were pretty much a must for most people. There's a swimming area that's deeper at one end as well as a side for water activities, like canoeing, kayaking, paddle boarding and paddle boating. Grayson tried the stand up paddle board that was donated to Camp No Limits and didn't do too bad! Luca and I kayaked around for a bit, he was a free loader and I did all of the paddling. It was fun though and we chatted about what we saw around us.

Bella tried kayaking with her new sports arm. She was less than thrilled about using it. It's a new tool for her, which creates a challenge. I "made her" try it for about 10 minutes. Yes, tears fell, yes she was NOT happy with me, yes I was the worst mother on the planet. Here's the thing, you don't just get a new tool without a few errors. You try it and try again until you get it right. Yes I "forced her" (her words) to use it. She's not used to using her elbow and shoulder in the motion necessary for kayaking so her prosthetic popped out from the paddle a few times. This pissed her off to say the least! Either way, it's trial and error and she'll have to practice which will help her find a way that this new tool is useful for her.

Then we had a short break to change for dinner. Dinner was decent. I was warned that it was edible and that was about it. Apparently, Camp Cross has upped their game. It wasn't bad. They have family style meals, so there's a bowl of each item at your table. It's free seating. This is where you lose your kid (or at least Bella) because she's already made too many friends to be bothered sitting with her parents.

Next up, a family art project. This was a really cool idea! I brought ours home and can't wait to frame it. It's the perfect addition to our house and a strong example of working together. Way to go Camp No Limits staff for coming up with this one!

Then, campfire and smores! The kids LIVE for smores, it's likely one of their favorite parts of family camping trips. It's no different for Camp No Limits, they know that it's a tradition to have a fire at each location. We opted to put the boys to bed here and the rest of us enjoyed the fire while they slept.

We made some great connections day one. We welcomed some new campers into the Camp No Limits family and we joined the Idaho Camp No Limits family. Friends were made by all... wait until you hear what day two brings!