Tuesday, January 28, 2014

CAMP NO LIMITS!!





Camp No Limits came and went. It seemed like we worked hard to raise funds and we waited all year to go and then it was here and in a flash it was over. I first want to thank so many of you that donated so we could meet our goal of going to camp. I must admit, I was sad to see it all end. In a matter of four short days, these children and their families became an extension of our family. They became a community we can reach out to for whatever we might need or have questions about. I'm hoping to make a photo album soon of our adventures so that she can look back on all the joys that those four short days brought her and our family.

This is a pivitol year for Bella, with people teasing her at the playground this summer, her asking all sorts of questions, us trying to learn how best to help her and her trying to learn and embrace so many new tasks. Ahhh the life of a four year old and all that it brings! I think it was important to go and for her to see there are other kids like her prior to entering the "real" school world in the fall. We've been with our same daycare friends for 4 1/2 years, our same friends at the gym for 4 years. This will be her first time in a big fishbowl of kids her age. She's a social butterfly and I know she will grow tremendously in the years to come!

For Camp No Limits, we arrived and checked in at the check in area and quickly started chatting with other kids and families. There are upper limb differences, lower limb differences and amputations of all sorts due to various reasons. Checking in was a very eye opening experience for me. There were all sorts of kids and adults there dealing with and embracing their challenges. The room was filled with people. Some talking, some hanging out doing crafts, some walking around the building looking for turtles, some playing basketball, hugging old friends and welcoming new. We were welcomed with open arms by every single person we encountered. Check in day was just that, a day to get settled and get to know others. We ate dinner in a giant cafeteria kind of place at big tables with other people joining your family. It was like one big (like 150 people big!) happy family. 

The next couple days were filled with activities. We had group sessions in the morning where we were split into groups. Our group was the upper group, so every person in our group for the morning had an upper limb difference or amputation. We talked about challenges, about things we wanted to work on, things the kids wanted to work on, any questions or concerns the parents had. It was incredible to have so much support and get so many answers. This group is where magic happened! Bella worked on buckling buckles (which she completely rocked!). She practiced zippers, snaps, buttons. Things that are very simple for two handed folks, things that we don't even think about. These things sometimes challenge people with one hand. I learned how to help her learn to put her own hair in a ponytail. She practiced tying shoe laces and we learned how to teach her how tie her own shoes one handed. This group was amazing!



We spent one morning going as a BIG group to see Winter the Dolphin at the Clearwater Aquarium. Winter is the star of the movie Dolphin tale. There were probably 100 people or more that went. Winter ended up getting her tail amputated from being stuck in a net. She has learned to swim with a prosthetic tail and without one. We got to watch her swim without her tail and hear about how Dolphin Tale 2 is coming out. We were lucky that this was all provided for us because we were part of the Camp No Limits group. Bella and Grayson even got to touch stingrays in a tank as part of the experience there. Bella LOVED that part! She stood at the tank for a long time and just kept touching each of the stingrays that passed by. She was so gentle with them and very excited. Grayson, well he's not quite as adventurous. He did it but not willingly at first. He wasn't as impressed with the rays as Bella was. He really enjoyed watching the nurse sharks in the tank. Luca loved making noise and trying to be disruptive during the presentations, ah the joys of being a little dude! 

Who touched our lives at Camp? Who didn't! Some of the all stars that stand out can't be forgotten. Josh was someone special to Grayson. Josh was born without arms from his upper arm down and without lower legs. How do we know? The ultimate form of flattery is when my kids pretend to be someone else. They were playing after our first night and Grayson said "I'M JOSH!" That truly melted this mama. 

Carrie was someone special to me, she was born without a left arm. She rocked a hook myoelectric arm that she blinged out with some sparkles. She took her time with me to answer my questions. She sat in the middle of the floor and practiced buckles with Bella until she mastered that task. She did countless ponytails so Bella and another child could learn. I videotaped that! 



Keegan, a 15 year old girl, was Bella's best bud. Keegan was born without a right arm. Bella and her have almost identical limb differences except on opposite sides with a nub and all. Bella keeps asking when we get to see her again and if we can facetime her. She even said "Man, I wish we were neighfurs (aka neighbors) with Keegan". Every opportunity she had, she followed Keegan around. Bella kept asking her to take off her prosthetic and Keegan happily obliged. I tried to explain to Bella that Keegan's arm was part of her and she liked to wear her prosthetic and that's ok. Bella verbalized how she wanted to just be like Keegan and have matching hands, not prosthetic hands. I think she was thrilled to see someone like her. Not to mention, she adores most girls older than her. Keegan was no exception. She was patient and friendly. Even Grayson tried to flirt and play with her. 

Jerry was Luca's buddy. I didn't ask what happened to Jerry's leg and it doesn't matter. He had a prosthetic leg and he builds prosthetics for a living. Talk about cool! He reminded me of my dad, only he has a strong east coast accent! Every single time Jerry walked in the room, Luca reached for him. I was teasing Jerry that when he was fussy, I was going to come find him. Well one afternoon, Luca was fussy. Jerry walked in and I teased that it was perfect timing because he was fussy and Jerry was "up" for his turn. Jerry laughed and happily took him... well he instantly got smiley and quiet! Little stinker! 

We couldn't have asked for a better experience. At the end of our journey, we left with many more members to our family. People we can reach out to if we have a question or concern. It's invaluable! It was perfect timing for our family and I'm hoping we can make it back in years to come. I think every Camp No Limits can only bring more confidence. Confidence is key, especially when you are a woman growing up in the world today.

Thank you to all of you that made camp possible for us. Any funds raised from this point forward will be put towards our Camp No Limits fund for the future. We're already looking forward to our next trip with all of these amazing folks. What will we learn next time?!

Our experience at Shriner's


(At soccer practice)

We had our first appointment at Shriner's in Chicago on December 20th. I was super emotional prior to our visit and had a hard time blogging because every time I sat down in the days before our appointment to blog , I would cry. I've said it before and I'll say it again, I can be an emotional person, especially when it comes to something that involves my children. I felt like we were going to Shriner's to modify Bella and in our eyes, she's already perfect. I'm thankful for the Lucky Fin Project and the many other resources in the limb difference community. After talking with some of the other parents and the limb different adults, they put it in a different light. They said not to think about modifying her to make her different or better but to think of it as giving her a tool to make her life easier if she chose a prosthetic.
 
Shriner's was amazing! I think they fed all of their employees happy shots before they started their shift. Everyone was smiling, happily greeted us and thanked us for chosing Shriner's for Bella's care. Their attitudes were incredible. I'm a tiny bit jealous that they were thrilled about their jobs. I love my job but don't we all have those days? Not one single person was having one of "those" days. People were warm and welcoming and took their time with us. We didn't feel rushed at all.

(Because I love this picture of her excitement!)

 
We checked in at the front desk, went over insurance information at another desk, then went into our room. Bella was given 2 little stuffed animals and they were so sweet to her, kneeling and getting on her level to talk with her. We then met with the doctor about prosthetic options, his nurse, a resident and a representative from a prosthetic company sat in on the appointment with us. The doctor showed us about 10-15 different hand/arm options. We saw a passive arm, which is an arm that just looks like an arm and hand and does nothing functional. It's meant for cosmetic purposes. We saw a arm that has a hook at the end (Bella calls this a "snapping hand", it looks much like Gary Wetzel's) that has a strap that goes around the shoulders like a harness and can open and close with moving your shoulder in certain directions. A myoelectric arm which has electrodes that would connect to Bella's forearm and by moving her forearm, the hand would open and close. We saw various types of sports hands, one for gymnastics and one for biking or kayaking. We also saw multiple styles that were somewhere in the middle. I must admit that the advancements in lower limb prosthetics is much better than that for upper limbs, in my personal opinion.
 
The doctor asked Bella "Do you want one of these?"
 
She said "No, I don't want one of those."
 
"Do you want one of these for Christmas?" He asked.

"No, I want a baby doll for Christmas."
 
"Well if you could have a baby doll and one of these, do you want one then?"
 
"Um, No. I don't NEED one of them."
 
(Concentration at it's finest)

You are SO right my sweet girl, you don't need one. You are absolutely perfect just the way you were born! We wouldn't change you for the world. However, if there ever came a point in Bella's life where she felt like she needed or wanted one, we would be on board 100%. Part of being a parent in my eyes is knowing when to step up and intervene and when to back down and let things be. I'm a firm believer that what is right for one child, may not be right for another child. There is no right or wrong way to handle a child with a limb difference. As far as Bella and her limb difference, we are doing the very best we can. We are learning as we go. We make a decision and we go with it.
 
Some have said that we should have started her with a prosthetic from the get go. I've also been told that we shouldn't let our 4 1/2 year old make such "big" decisions. We did not agree. We wanted her to be strong and confident without it. We wanted her to learn to do things without it and not feel like she needed to hide her hand. My fear was what if it broke and she was without it and then didn't know how to do something without it. As for her making "big" decisions at 4 1/2, she's a strong, opinionated, smart, confident little girl. This "big" decision is something that would impact her life in a HUGE way, make no bones about it. She would have to relearn how to do nearly everything she already does without one. She feels good about the way she is and we want to continue to support her.
 
The physician at Shriner's said that there is no right or wrong way to handle limb differences. He said there's children that have used a prosthetic from 6 months old and then stopped using it as a teenager and never looked back. Then there's other people that have never used them in their life until they hit adulthood. He said there's people that also use them only for certain tasks, like biking or hockey. Like I said, I'm not saying those who start early are wrong. They are making the best decision for their child, so that's the right decision for them. Basically what I'm getting it, is go with your gut, follow your heart, do the very best you can in the situation that you are given and feel confident in that decision. I know we do.
 
Ultimately, it was a productive visit. She saw options, we saw options. We gained insight on how to modify her tricycle so she can steer it easier. We gained insight into what kinds of things are available if she needed or wanted something. We also got into the Shriner's system, which is important. It means that should she change her mind or need something in regards to her limb difference in the next 18 years, they will treat her.
 
That's big people, real big!

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 f...