tag:blogger.com,1999:blog-4287189154777669762.post2886578080188454294..comments2023-03-29T09:08:28.943-07:00Comments on Madeleine and Max: Prosthesis.... Or is it Prosthetics?Nikihttp://www.blogger.com/profile/06097167155829602293noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-4287189154777669762.post-79765662520421033952008-06-08T16:10:00.000-07:002008-06-08T16:10:00.000-07:00I agree with Katie about the attention thing. I al...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. <BR/>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. <BR/>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.<BR/>Anyway, i relate alot with your questions. I remember going through alot of that doubt early on in the girls' lives.<BR/>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. <BR/>My Caitlyn can keep up with the most of 'em, too! :Dtwin power mommy ♥https://www.blogger.com/profile/12916993512099238211noreply@blogger.comtag:blogger.com,1999:blog-4287189154777669762.post-67274388145198588862008-04-18T13:02:00.000-07:002008-04-18T13:02:00.000-07:00Thanks Kelley! That totally makes sense, in fact I...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?<BR/><BR/>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!Nikihttps://www.blogger.com/profile/06097167155829602293noreply@blogger.comtag:blogger.com,1999:blog-4287189154777669762.post-53382987508885753782008-04-18T06:56:00.000-07:002008-04-18T06:56:00.000-07:00Hi Niki,So many great comments so far! In talking...Hi Niki,<BR/>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'! <BR/><BR/> 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...Kelleyhttps://www.blogger.com/profile/12411446940722928239noreply@blogger.comtag:blogger.com,1999:blog-4287189154777669762.post-23694410801541412372008-04-17T12:49:00.000-07:002008-04-17T12:49:00.000-07:00Hi Visitors! There must be something about kids n...Hi Visitors! There must be something about kids named Reid with prosthesis! ha ha. Just Kidding, of course.<BR/><BR/>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! <BR/><BR/>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!<BR/><BR/>I didn't notice any grammar errors! :)Nikihttps://www.blogger.com/profile/06097167155829602293noreply@blogger.comtag:blogger.com,1999:blog-4287189154777669762.post-37303976297598155482008-04-16T17:22:00.000-07:002008-04-16T17:22:00.000-07:00Hi.I linked over from your sig on an e-mail to the...Hi.<BR/><BR/>I linked over from your sig on an e-mail to the I-CAN group. <BR/><BR/>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. :)<BR/><BR/>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. <BR/><BR/>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.<BR/><BR/>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.<BR/><BR/>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. :) <BR/><BR/>Does she have a definite favorite character or color? <BR/><BR/>Good luck with your choice!<BR/>Whitney<BR/>Dallas, Texas<BR/><BR/>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. <BR/><BR/>PPS I'm much more of a math and science girl so I hope my grammar/sentence structure doesn't drive you crazy!Whitneyhttps://www.blogger.com/profile/03156724404663738794noreply@blogger.comtag:blogger.com,1999:blog-4287189154777669762.post-14178597087830656672008-04-16T09:28:00.000-07:002008-04-16T09:28:00.000-07:00You have no idea how much I love reading your blog...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.<BR/><BR/>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. <BR/><BR/>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. <BR/><BR/>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.<BR/><BR/>I don't know why I'm so upset about Reid not getting a pipe leg. I just think they're awesome. <BR/><BR/>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.everyday katiehttps://www.blogger.com/profile/16315154839945263291noreply@blogger.comtag:blogger.com,1999:blog-4287189154777669762.post-17730978241278170692008-04-15T18:45:00.000-07:002008-04-15T18:45:00.000-07:00As you know, we jumped into the pipe leg, and the ...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!Jennahttps://www.blogger.com/profile/09605537112077617762noreply@blogger.com