It's gym day!

This is our "morning gym day routine"...

"Mom can you tie my shoes?" As I'm naked getting out of the shower and still wet. I mean, just because I'm in the shower or getting out of the shower AND the door is closed, clearly means nothing in this house... ever! Even the dog nudges the door open if it's not all the way latched.

"Babe, you know how to tie your shoes."

"But Mom, it's a gym day and if I do it they'll come lose during gym and I could hurt myself."

"Bella seriously you know how to tie your shoes, you are 8 years old girl."

"Mom I don't want to hurt myself in gym. It'll be better if you do it." I finish drying off and tell her to brush her teeth while I get myself dressed. I come back and and tie her shoes.

"Boo you really have to practice this. You've said you want to be independent and then you ask me every day to tie your shoes."

"Well I do want to be independent with SOME things."

"Well tying shoes is something you are going to be independent at real soon sister!" Out of the bathroom she goes begging me to make a smoothie.

She's playing the card folks. The "I need to be safe and I only have one hand card." Trust me, I know this kid, she's been playing this for awhile now. She's not concerned about safety when she's trying to use a sharp knife to cut an apple.

"Leave me alone! Let me do it! I'm TRYING to be independent and you guys aren't helping me if YOU do it!"

She's even got her younger brother to tie her shoes.

"Grayson can you tie my shoes, I only have one hand and it's harder for me." That kid loves his sister like he loves no one else and he happily ties her shoes.

Those cards are played out folks. She made a video on how to tie shoes for another limb different kid. If she can do it on video, I have proof that she CAN be independent and SAFE when she ties her shoes... though I can't fault her. Now can someone come cook my dinner, I'm not safe with sharp knives or fire.

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!!

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!