Tuesday, June 11, 2013

Prosthetics Update




Its sorta unofficially official, but we've decided to stop using Lamp's prosthetic arm.  At least for now.

I think that's the first time I've said it outloud.

From the outside prosthetics seem like a no brainer.  A prosthetic arm allows her to have length, reach and an elbow--something that bends and allows a hand-like device to come up to her mouth.  It's the second best thing to having an actual arm.  But the fact is, it's not even close.

In truth prosthetics are one of those widely misunderstood things when it comes to limb differences.  Just to be clear, I'm talking about upper prosthetics here--they're a completely different ball game from lower prosthetcis.  When Lamp was first born we were told by the medical community that her best shot at using prosthetics in the long run is to have her fit as young as possible so her brain basically gets used to the idea of having this extra appendage there, even though there is very little function.  As you may recall she took to her prosthetic arm very well.  She never used it to grab with her other arm--well, not much--but she used it a lot to lean on and for balance--like in this picture here.


When the time was right to graduate to an elbow we jumped at the chance.  Even though it wasn't myoelectric (electronic, moveable parts) we figured it would once again be a training tool.  The first problem is that adding an elbow took away her ability to lean on it, because the elbow would just bend and collapse under her.  Second, it was heavier.  Third, even as a training tool it's not very realistic.  She got to the point where she could open the thumb joint, put a goldfish cracker between the thumb and finger and then slowly bend her arm upwards until she could put the fishy in her mouth.  A good party trick, but not practical for actually eating 10 fishy crackers in under an hour.  There was of course the times we put a sandwich in her hand allowing her to eat it all by herself--that was actually one of the few useful things her arm could do.  But even that wasn't perfect as the sandwich needed readjusting throughout the meal.  After a few times she didn't want to eat her sandwiches that way anymore.



At our last visit in Dallas I asked the Dr. about her prosthetic.  I told him she was only using it during therapy once a week.  He said that was fine, we could continue doing that.  He's always been supportive of what we wanted to do, but I wanted to know his real opinion.  What would he do?  He said if it were him he would stop using it.  I told him as a mom that can be hard to walk away from because you want to give your child the best possible chance at everything.  In our minds an arm and a hand--even fake ones--are giving that best possible chance.  He  then went on to tell me that yes, the thinking used to be fit every kid as young as possible to help them start adjusting right away.  He said they've got a basement full of prosthetics that have been returned to them.  Kids, especially congenital amputees, would just rather use what they have.  Sensation is key, you need feeling in order to be dexterous.   Right now Lamp would rather use what she has...and she's doing really well.  He basically gave me the permission I needed to walk away.


This is by no means a treatise on how upper prosthetics are a hoax and don't work.  That's not true--they can and do work for many people. Surely you've seen this video of a woman who lost her arms and is now using these amazing bionic hands.  But these kind of prosthetics are expensive--like house payment expensive.  And besides, for a lot of different reasons they're not available for children anyway.  The other thing is, it's different for people who once had arms and hands and are now trying to manage the world without them vs. someone born without hands and arms.  At least it seems that way.  Lamp really doesn't know any different and in a lot of ways, it's an advantage.  The good news is there are a lot of kids who use 'helper arms' made for specific tasks--like riding a bike, playing an instrument and so on.  I'm happy to know that if Lamp needs or wants one down the road for something specific, or even if she wants to give a general prosthetic a try again, we have that option.  I would never try to tell another parent what to do in these circumstances.  My only advice would be to follow your child's lead and never force them to wear it--at least not continually.  

There was a time when I couldn't imagine navigating this world without hands.  It seemed as necessary as air and water.  I now know different.  I'm not saying it's easy or going to be easy.  It's not.  But I have come to realize that there are a lot perfectly able bodied people out there more handicapped than Lamp will ever be.  Weaknesses and fears if left unchecked can be more debilitating than missing hands.  We all have disabilities.  I know, alert the cliche police, but it's a fact.  I'm so grateful for a little girl who has taught me that happiness, joy, determination and gratitude make you more able than missing hands make you disabled.  




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Interesting reading on the topic:
The Myoelectric Myth
Thoughts On Using a Prosthetic from Living One Handed

12 comments:

  1. you are amazing parents and not that you need support or validation or approval from anyone, but I do support you 100% because you always put your kid 1st.

    Bravo and best wishes xxxx

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  2. I love this post. Our son was born without most of his left arm and people often look at us like we're crazy when I tell them he'll probably never use a prosthetic. Truth is, he doesn't need it and would probably hate it. I think they can do great things for a lot of people. What a cute little girl Lamp is. I would totally hook her up with my son. ;)

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  3. pallavi10:21 AM

    great post and you I am sure it would have beena tough decision but moms know the best for their children

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  4. Anonymous11:29 AM

    Do you read Jen Sullivan's blog, olivespearls.typepad.com? She has two children with upper limb differences (both congenital) and has discussed why they are not pro-prosthetics, for many of the same reasons you mention here. :o)

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  5. My cousin had two prosthetic arms, one that was just a plastic arm with a hand and when he was older, one with a pincher on the end. He never wore them regularly. In fact, we used to chase each other with the pincher arm! He's going on 30 now. My son also has a friend without the bottom part of his arm. His mom said his first sentence was "No Helper Arm". They went to a dr recently that had a very high-tech prosthetic. He could grip cans and do all sorts of stuff with it. While it was amazing, he didn't want it.

    I think it's important to follow our children's cues, no matter what we/they are facing, no matter how big or small.

    Very different yet similar, I am left handed. Not a disability or even a blip on the radar. Yet there are all sorts of things marketed for left-handed people. It makes me laugh. Every person has some kind of issue or challenge. But we cannot make up new products or special allowances for every little thing! Part of being a functioning, contributing member of society is learning to adapt to the situation you are in. Lamp being able to do things on her own (without helper arm) will benefit her, even if later in life she chooses to use one for certain tasks.

    Lamp is an amazing little girl and your family is awesome.

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  6. We had a friend at school who makes prosthesis (including his own and for his son) and he said most people who could use them often choose not to; especially kids. And that they find themselves happily capable in a zillion different creative ways. Go Lamp.

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  7. Anonymous5:35 PM

    Miss Iowa !!

    http://now.msn.com/miss-iowa-is-one-armed-woman-nicole-kelly?ocid=ansnow11

    Your little sweetie is amazing and will be just as amazing each and every year of her life!

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  8. We're not currently pursuing prosthetics either. I think it's so difficult for us when they're little because we are afraid of missing "the window" without really having a lot of input from them. I mean if being made to go to ballet can send you to therapy, think of what your parents deciding for you that you didn't need a prosthetic arm might do!

    I'm afraid I was woefully ignorant about prosthetics until we were in the position where we were considering one. Then I was shocked. What do you mean there are no shoulder joints? What about all the cool stuff I see on TV?

    What I do know is that our kids make our world broader and our imaginations bigger. We can't ask for much more than that.

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  9. Yes, Lamp IS amazing! She is a shining example of "Eternal Perspective".... She is an inspiration, and so are you dearest "Baby Girl"!

    All my love,
    G.G.

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  10. Thank you for the two links you provided at the end of the post. I didn't know where you were coming from and why it was an important decision you had made to put the prosthetic arm aside. Very enlightening! Good for you being in tune with your daughter!

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  11. Anonymous9:43 PM

    Loved reading your blog. I found it via you article on aol. My friends husband John was born without any arms and has a motivational website and facebook page that I find so uplifting! So many of your stories that you have shared remind me of what John and his family have experienced. Feel free to check out his new facebook page https://www.facebook.com/#!/JohnFoppeWorldatYourFeet/info or
    his webpage. He has a lot of photo and stories from his childhood!
    What an amazing family you have!

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  12. Hello! As anon mentioned above, I have 2 children with congenital LBE amputations. They've never used prosthetics and thus far have never wanted to. They tie their shoes, they both knit, and in every case, they have found a way perform a desired task before we've had a chance to think of an adaptation. Lamp is a beautiful little girl and I applaud you for respecting her preferences loud and clear!

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