Saturday, July 27, 2013

Happy Birthday Bug!!


Four years ago on July 24th, we were waiting anxiously for our Bella to be born. We should have known from the get go that she would be full of spunk since my water broke 5 weeks early! I remember crying because I was so nervous that she would need a NICU stay. Instead, she came out calm and collected, weighing a whopping 5 lbs 10 oz, big for a preemie.

Four years ago, our lives were forever changed. We became parents. It would bring a world of love, challenges, learning, happiness and joy. We both fell in love with our daughter and fell in love with each other all over again.

We are blessed beyond measure. Thank you to all who have helped us meet our birthday goal of $500, we've raised over DOUBLE our first goal and it's only the beginning of this journey. There are many other fundraisers and activities waiting in the wings. Today is a day to be thankful, to be happy.

Bella Kailani,
Thank you for blessing our lives. For chosing us to be your parents, I honestly believe that babies chose their parents. We are the perfect parents for you, we will continue to rise to the challenges that you bring to our lives. You are teaching us how to be parents through the different ages. You are teaching us to be the parents of a strong willed, opinionated little lady. You are full of life. You show us each day how to love. You are the best big sister to your brothers. Luca's face lights up when you walk into the room. Grayson longs to do things just like you. They are learning from you. Watching the world through your eyes brings back memories of my childhood. It reminds me to stop and be patient. To really take in the little moments in life, for they truly are the big moments!

Friday, July 19, 2013

Meeting with the prosthetist

Say that 10 times fast! Today, we went to Hanger Prosthetics in Milwaukee for the first time where we met Scott. I thought there would be pictures from our visit but there was nothing really to take pictures of. Yesterday, I felt overwhelmed and almost a little sad about the whole thing. We think Bella is perfect just the way she is, so modifying her in any way made me feel a way that I had not felt before. Life is about change and growing and learning. As a mother, those things are constant in our lives.

Our visit at Hanger went well. It was full of information. The reason we just now pursued a prosthetic is because when Bella was first born we wanted her to learn to live life with what she was born with and make the most of what she was given. I'm not saying early intervention with prosthetics is a wrong choice or a right choice, it's just not the choice that we made for our daughter and our family. She has been asking about fingers for her other hand so we wanted to find out the options and we had hoped for her to see some options.

We learned about a cosmetic arm, one that was there purely as a cosmetic. It did nothing except "look" like part of a forearm and hand. This would mean that the feeling she has on her left "hand" (we call it a hand even though there are no fingers), would be covered with plastic. I didn't like the thought of putting something on that wasn't useful at all. This may be something she wants as she gets older though. Scott said he finds many girls want this as they get older purely for cosmetic purposes. He finds its not worn all of the time and only on certain occasions.

We also learned about a more passive arm, one that you control with shoulder movements. It gets put on your limb (for her, her left) and then you control it by shoulder movements as it's strapped around your other shoulder like a harness of sorts. We actually got to see and touch one of these. It was heavy and looked cubersome to me.  At this point in her life I'm not sure she would want something strapped all over her body in order to have a hand on that side. I know my girl and I could see her finding it to be in her way or to constrict her. She hates jeans because they aren't "comfy", she's pretty opinionated!

We also learned about our last option, a myoelectric hand. There are two electrodes that get placed on your forearm and by moving the muscles in your forearm, the hand open and closes. They cost $20,000-$30,000! I think this would be our best option although I'm still not 100% that this would be something she would want to wear on a regular basis. It would help with bike riding and scooter riding and I could see her using it to help with fixing her hair as she grows.

 For us, we wanted her to learn to use everything she had because what if she had a prosthetic at an early age and then it broke one day. How would she do every day life things if she had never known life without a prosthetic? We weren't sure our decision was the right one or the wrong one. We just made the one that we thought was best at that moment in time. Bella can button buttons, put on shoes and socks, comb her hair, put in a headband and hair clips, she crawled without one and she zips up her coats without issues. She can do everything a child her age can do. We are now exploring the option of a prosthetic because she has asked about fingers. Today, she didn't seem very interested when she was shown one of the options... She's not even four though... she's still so young. We, as parents, don't want to pressure her into having one if she's not interested. That said, we also want her to have the option if she wanted that option. Today, we opened the door to options.


Tomorrow, we will open another door. We are going to a limb difference meet up in Chicago. We will be loading up our little family and driving there. It will be our first meet up and there are 12-13 families who are planning to attend. I'm excited to see what limb differences the children have, their ages, network with their parents, see the prosthetics, find out why kids have them and why others don't... It will be a good opportunity for us all to learn and see more. I feel like it will be so nice for Bella to see other kids are born just like her. We talk about differences (eye color, skin color, hair color, heights, etc) on a regular basis. She knows about differences. This will be an opportunity for us all to learn and grow together.

We are learning, we are growing, we are evolving together and individually.

Friday, July 12, 2013

Where there's a will...



Our strong willed girl is just that, strong willed! When she sets out to do something, she does it all of the way. There's no backing down once she puts her mind to something.  She always amazes us. We remember when she was first born, so many questions fill your head as a parent.... How will she wear a wedding ring? How will she tie her shoes? How will she button buttons on her pants or her coat? How will she hold things or carry things? How will she zip her coat? What about holding a sippy cup? How will she crawl? The questions flooded our heads. There are still days we have questions but so many of those questions have already been answered...

Tonight, I was lying in bed with her and she wanted a bow on her bunny's ear. Her bunny is her "lovey" and she sleeps with her every night. The bow on "bun buns" right ear is tattered and torn, it's very well loved. The bow on bun buns left ear fell off a couple of years ago. I replaced it with a new bow and she was not a happy camper about that so she took it off. Tonight, she mentioned how she's been wanting another bow for bunny and I just happened to have one. Bunny's from build a bear and it has just the basic build a bear bow around her ears. I offered to put the other bow on bunny's ear. She said "MOOOOMMM, I got it!" and so I watched wondering how she would stretch the elastic that was attached to the bow and get it around bunny's floppy ear. Not once did she ask for help. She stretched the elastic around her left hand, then put a finger in the elastic and she put it right in place. Never thinking twice about how it would be done. She just did it with no issues at all. I watched and then simply said "way to go doing that all by yourself with no help". She, of course, smiled her sweet smile and called me "silly". That's our girl!

Are you a parent of a child with a limb difference? Are you wondering how she crawled? How she held a sippy? How she holds or carries things? Keep checking back our blog and we'll post more about the challenges we thought she would face and how she answered so many of our questions by just growing. If you have specific questions feel free to email us!

To those who have donated to our camp fund, from the bottom of our hearts, we thank you! We are working hard towards our goal and working on some more fundraisers. Our garage sale was a success and there's still more to sell. We're hoping for one more garage sale in the weeks to come and then on to different fundraisers! Again, thank you all for those who are reading and those who have donated. It means more than we could put into words!


Wednesday, July 3, 2013

Welcome

Welcome to our first blog post! We'll try to give you some background here about Bella and about why we are starting this journey now.


Who is Bella?


Bella is a spunky, sweet little 4 year old first born. We found out at our 20 week ultrasound that our daughter would be born with left hand limb difference, meaning she was born with her left forearm and wrist but no fingers on her left hand. She has grown to not know life any different. Bella has never used a prosthetic. We encourage her and embrace her at every turn. She has more recently started to question why she was born this way and why we can’t plant seeds in her “little hand” to grow fingers. She does everything other kids her age do, she adapts things to her. She makes things work in a way that work for her, often without any guidance from us.


Why did we start this blog now? 

With Bella starting to ask more questions about why she was born this way. She's started to notice the stares and looks that people give her. She notices that people touch her "little" hand and are curious. Curiousity is normal, invading and intruding on someone else's space is not okay. We're working hard to teach her the difference. She feels sad and unsure when she realizes people are drawn to her hand. We're trying to encourage her to explain to people about her personal space and asking before touching. Touching someone else without asking is not okay. Asking questions and listening to their answers is a perfect way for someone else to learn. Due to age, she's curious, she's learning, she's growing. Now is a vital time in her life for her and us, as her parents, to network with others so we can help her become the most confident, independent young girl that she can be. 


What is our goal with this blog? 

 Our main goal is to educate others about her difference. We want to teach them how to educate those around them about limb differences, how to approach people with differences and how to ask questions. Our secondary goal is to raise funds to send Bella and our family to Camp No Limits.

What is Camp No Limits?
Camp No Limits is a non-profit organization that provides camps for children with limb loss and limb differences. It provides education, mentorship and support for kids and their families. It creates an opportunity for these children to meet and see other children like them. It also allows parents to network with one another to discuss how to better educate our children how to do things that may be a challenge, how to respond to stares and questions and more. It also provides us all the opportunity to figure out how to better educate the public about these differences.  More information can be found at


Why we want to do this?
We believe that instilling confidence and high self esteem in young children is important. Bella is a very strong willed little girl. We are so very proud of the person she is becoming. That said, it's our job as her parents to continue to encourage and embrace her. It's our job to be sure that she knows she is in fact perfect just the way she is! Bella is quick to respond to questions from others with “this is just how I was born” or “I was born this way”. We try not to intervene when possible to give Bella the opportunity to respond to situations in her own way. After being followed around by some other children at a local park, I saw her try to hide her left arm in her shirt. She explained that she needed space and didn’t want her left arm to be touched. I promptly intervened and took the opportunity to teach the other kids about differences such as hair and eye colors and about personal space and not touching someone else without asking. 

Please consider donating to Bella's camp fund. 100% of the money raised will be used to send her and our family to camp. You can donate via www.paypal.com by sending your donation to bellacampfund@hotmail.com Feel free to email me with questions or anything else you think would be helpful for our blog! This is a learning process for all of us.

We will be planning some fundraisers in the months to come as well in the Milwaukee and Kansas City areas! Stay tuned for updates!

Our first fundraiser will be July 11-12 in the form of a garage sale and bake sale at our home. We can't wait to see how it turns out. 

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 t...