Tuesday, April 15, 2008

Prosthesis.... Or is it Prosthetics?

Some people know that I'm a bit of a grammar hound. I'm not ashamed to admit this. In fact, I'm quite proud of it. I actually enjoyed diagramming sentences in high school. I liked learning the French language because I loved learning a new grammatical puzzle, if you will.

If you know me you know that I hate it when signs are incorrect. Particularly with apostrophes. You don't need an apostrophe when you are not writing a contraction or showing possessive. For example...

Don't (apostrophe in place for the 'o'.... do not = don't)

Suzie's dog (whose dog? Suzie's)

The Kids' bikes (multiple kids and their bikes- showing possessive)

Plurals do not get apostrophes...

the dogs (more than one)

the dog's bone (possessive as to whose bone)

Get it?

The difficult one (and the one that drives my students into an angry and argumentative fit is...

Its and It's

It is = It's (contraction)

Its (plural)


I know, I know....


Okay so let's talk prosthetics vs. prosthesis

Prosthetic is an adjective describing the noun. She has a prosthetic leg. Leg is the noun and prosthetic modifies it or describes it.

A prosthesis is a noun. She has a prosthesis.

If you wikipedia Prosthesis you get this...

"In medicine, a prosthesis is an artificial extension that replaces a missing body part. It is part of the field of biomechatronics, the science of fusing mechanical devices with human muscle, skeleton, and nervous systems to assist or enhance motor control lost by trauma, disease, or defect. Prostheses are typically used to replace parts lost by injury (traumatic) or missing from birth (congenital) or to supplement defective body parts. In addition to the standard artificial limb for every-day use, many amputees have special limbs and devices to aid in the participation of sports and recreational activities."

If you type in prosthetic it reroutes you to prosthesis because prosthetic is an adjective or a derivative of prosthesis (the word).

If you type in prosthetic into dictionary.com you get this...

http://dictionary.reference.com/browse/prosthetic

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Okay, so this is not the goal of this post but I had to clear this up first.

Madeleine should get a new prosthesis in the fall or so (or a new prosthetic leg, shall I say). We have the option of covering the leg so that it has some sort of print on it. We can also do a 'tattoo' so that you have a picture and it is laminated onto the leg. We do not have the option of a cool pipe leg. Unfortunately. As Madeleine is a below knee amputee (bka) and thus there is not enough room between her actual leg and the prosthetic foot.

I thought I would put up a few pictures to help you understand the complex world of prosthetic limbs. At the end of this post I am hoping that you can help us make a decision.

Logan's cool pipe leg which we cannot have :(
Love this picture of Logan! He is laughing! What a kid!

Mei Mei's cool laminated pipe leg (example of laminated patterns)
So pretty!


Mei Mei, herself, what a star!

Helen's fabulous Finding Nemo leg
What kid would NOT want this leg?


Another view. Cute shoes too!


Helen, and her cuteness, in her fantastic leg! Helen is just over two years olf and obviously doing as well as Madeleine with her prosthesis. She was born with the same type of thing as Madeleine and her mom, Amy, has been a huge support of me! Thanks Amy!


All of Sarah's legs
Sara has the same type of amputation as Madeleine. I don't know this child personally but I wish I did. She seems incredible. She surfs, she swims and she is so beautiful. Pretty cool that she has all these legs, eh? Shows you how much growth can happen. She donated the legs, by the way.

Sarah's new leg:





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So now you see our options. I have been think that we want to laminate some fabric onto Madeleine's new leg. It will look like Helen's or Sara's remember. The dilemma in making this decision is knowing that more attention will be brought to the leg. Parents who have kids with prosthetic limbs know all about this. How much attention do we really want? Should I just get it out there? Am I in the mood to explain what 'this' is? I'm not sure. Sometimes people don't even know that Madeleine wears a prosthesis; especially when she is wearing pants. Other times they notice but do not know what it is.

Here is a conversation that occured at the park the other day.

Older lady that was playing peek a boo with Madeleine: Is that a cast on her leg or something?

Me: No, it is an artificial leg (pause for understanding) a prosthesis.

Lady: a what?

Me: a prosthesis. She doesn't have a foot so her leg fit into the prosthesis so she can walk.

Lady: does she have a leg?

Me: yes, about this much below her knee (showing her with my fingers spread).

Lady: Oh. Was she born without a foot?

Me: No, she had a foot but it wasn't functional so we amputated.

Lady: (gasp) wow, that must have been a difficult decision.

Me: yes, it was. But she is so 'normal' now we don't really think about it.

Lady: Well, now yes, but it will be hard for her when she is older.

Me: Yep, probably, but you know, this isn't really that big of a deal.

Lady: (raises eyebrows)

Me: seriously, having twins is harder than dealing with a child with a prosthesis. She is fine.

Me: okay, gotta go... nice chatting.

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What would you have said? Where is the balance between educating and just wanting to be left alone.

7 comments:

Jenna said...

As you know, we jumped into the pipe leg, and the stares and conversations are non stop now. But like you said to me niki-get it out there! My son is amazing and look at all he can do with his leggie! I think beautiful flowers would be great, or go with another doll leg, its only a matter of months before Madeline chooses her leg type and print. Thanks for the post, very cool!

Katie said...

You have no idea how much I love reading your blog. I have never known another parent to go through this. I love that I've had this same debate with my husband. It's so good to hear someone else go through it.

I can't decide if more attention is good or bad. More attention just points out how different he is. I want him to feel as normal as possible. But at the same time, attention is good. I NEVER mind when people ask questions. I want him to see that I'm not embarrassed to talk about it. That is IS normal for us...not something to be embarrassed about.

Of course when he's a little bit older, he can decide whether or not it's worth sacrificing a little extra attention for a spectacular leg design. But for now, I make that decision and it's a tough one.

At this stage in life, he doesn't mind the attention. Kids at the playground and at church and things are fascinated. They alway knock on it or ask him and his brother questions. He's fine with it but doesn't seem to understand why they care. One kid referred to it as a "robot leg." Kids think it's awesome.

I don't know why I'm so upset about Reid not getting a pipe leg. I just think they're awesome.

I'm sorry I feel I have to write so much. I seriously have never had anyone who knows how I feel about this. I didn't realize how much I would enjoy this. Thanks for letting me in.

Whitney said...

Hi.

I linked over from your sig on an e-mail to the I-CAN group.

We have a 5 year old named Reid who wears a prosthesis. We opted for a colorful leg and let Reid decide on the color/design. He is a lbk and his limb is still pretty long so no pipe yet. He got his first prosthesis about the time he turned four. He'd seen a lime green one that he liked so he chose that for the first one. They custom-mixed the color and he loved it. He chose solid dark/flame orange for his second leg. He's about to be casted for a new one and he said that he wants horizontal rainbow stripes. :)

I think that having an almost obnoxious color has lead to people assuming (correctly!) that we are comfortable with his prosthesis. (We hope it shows Reid how comfortable we are, too.) People ask questions without the uncomfortable hesitation we expected.

We get questions all the time and I think our comfort with answering has modeled well for him. When asked by other children, his answer has gotten shorter and shorter as if it's just not worth much explaining. :) He usually follows up his answer with a jump, run, or climb to show what he *can* do.

I think it helped his acceptance of being "different" that we talk a lot about how differences in the world make the world a more interesting place...how everyone has something that makes them unique and how many people use some sort of help - glasses, hearing aides, walkers, contacts, canes, prostheses, artificial hips, wheelchairs, etc - to help them function better or be more comfortable. Maybe something like that will connect with Madeleine when she's ready.

FYI, he had a suspension sleeve on his first leg and he was disappointed that so much of his lime green was covered by "flesh colored" sleeve. :)

Does she have a definite favorite character or color?

Good luck with your choice!
Whitney
Dallas, Texas

PS I think you did great answering her questions! How much it effects Reid's life later will be mostly determined by how much he lets it! If we dwell on it, he will learn to dwell on it, too.

PPS I'm much more of a math and science girl so I hope my grammar/sentence structure doesn't drive you crazy!

Niki said...

Hi Visitors! There must be something about kids named Reid with prosthesis! ha ha. Just Kidding, of course.

Katie, I'm so glad you found me! I cannot believe you haven't been in contact with other parents. There is a yahoo group for parents with kids with FH and another forum out of the UK. In addition you may want to check out the I-CAN network for children amputees. I'm sure if must have been very hard for you to go through this 'alone' although, I have to say, you seem very well adjusted as does your child!

Whitney, nice of you to come by and post a comment. I think you are absolutely right in being open and positive about the prosthesis. It is true that as parents we need to model the behavior we want our children to have. Good for you!

I didn't notice any grammar errors! :)

Kelley said...

Hi Niki,
So many great comments so far! In talking to other parents that have kids that have had both types of legs (on ICAN), they felt in general folks more often just couldn't quite figure out what their child was wearing when they went with the flesh color leg but using the flashy fabric it was always obvious so at least in that sense in cut out those 'bewildered' stares. Like someone else mentioned, we hate that part of her belt suspension covers her beautiful butterflies! Also never knew there were so many that wanted our 'pipes'!

When ever someone asks me about MeiMei's leg I just answer she was 'born with a short leg' so I think for most people that is enough of an answer and I really don't ever have to go into the surgery discussion. Obviously for a child, I will usually follow that up with something very upbeat about something cool she can do with her 'butterfly leg', (for boys she lets me stomp on it really hard and then I offer to stomp on their foot!) and for adults I just get ready for the next question as it could be any question in the world...

Niki said...

Thanks Kelley! That totally makes sense, in fact I'm sure that I want something flashy now! So, why does MeiMei need a belt suspension? Can she have a suction socket?

Whitney, I went on your Mei Tai website and I think they are gorgeous! I wish I had had one when the babes were little. I also wanted to tell you that I LOVE Reid's lime green leg! It looks awesome with his hair!

twin power mommy said...

I agree with Katie about the attention thing. I always want my caitlyn to see me explaining her Lilly leg without it being a big deal. I like to tell people what happened to her without it being weird. I don't ever want someone to not ask because they are worried they'll offend me. My girl needs to learn to not have a chip on her shoulder (so to speak) about her leg. If she sees that it's a sore spot for me, it'll be a sore spot for her as well.
I always went with a patterned AFO (oh! and in case you didn't realize, her leg is not amputated, she has other issues with it, though) But the patterned AFO let her feel like it was her SPECIAL, very special thing that not everyone has. I want her to be proud of her lilly leg and not ever have to worry about it being a source of embarrassment. Even with all the prompting and loving on her lilly leg, she still gets a bit self conscious whenever kids her age ask her about it.
i always have to stress to her that she needs not be shy, but to vocally explain how precious her lilly leg is to us all and that our God saved it.
Anyway, i relate alot with your questions. I remember going through alot of that doubt early on in the girls' lives.
Not knowing how open we were going to be, should we be gentle with her, or expect the exact same out of her. We chose to expect the exact same.
My Caitlyn can keep up with the most of 'em, too! :D