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.


  1. Sarah! We must meet. :) I have a 7 year old daughter born JUST like your Bella. But mine is Ella:) We also live in WI, (Neenah) and attended our 2nd Camp No Limits in June!(MO). Ella got her 1st prosthetic 3 weeks ago. I cried like a fool:) if you want to touch base ever my email is!:)

  2. It is so funny that you mentioned that Bella doesn't like jeans. My daughter Amanda was born without a right hand, and she hates jeans for the same reason!

    Follow Bella's cues about the prosthetic. Amanda was fitted with a passive one before she was a year old. At first it seemed like she was getting used to it and was doing really well. Then she figured out that she could actually do more without it. There were a couple of times she ripped it off and chucked it across the room.

    We tried a myoelectric hand, but I think that without being able to sense what she was holding, it just didn't work for her. Ours didn't have a wrist that she could control, so it was really hard for her to use. We finally gave up on it and haven't looked back. If she wants to try one again later, we certainly will, but it will be up to Amanda if she wants to.

    Amanda is 12 now, and the teachers at school say that there really isn't anything she can't do, and some things she does better than other kids.

    Sorry for the long comment, I could ramble on forever!



CAMP NO LIMITS all booked!

This picture was taken just last weekend while we were camping. Bella and I were walking around the camp ground just the girls. Dirty from...