Tuesday, April 26, 2011

Unusual Milestones


What has surprised me most about having an atypical baby like Lamp, is just how typical she really is.  The day in and day out is just like any baby experiences...I feed her, change diapers, put her down for naps, play with her, sing songs, tickler her, talk in ridiculous baby voices and give her squishy baby hugs telling her that I lovelovelovelove her to death.  Lamp, in turn giggles, babbles, bangs on her toys and of course eats, sleeps and poops.  For the most part I don't "see" her limbs.  What I mean is, I know she's different and deal with those differences daily, but when I look at her she's just Lamp and she looks exactly how she's supposed to look, and she is exactly who she is supposed to be. 

Then we have something that comes up that reminds me just how different parenting a baby like Lampy is. For example I never thought I'd have a baby whose major milestones would include baby's first prosthetic arm.  But here we are, Lampy with her first prosthetic arm!  

Ta-da!  


Taking a cue from Forrest Gump we often refer to it as her magic arm.  


I don't know if this is interesting to anyone else, but I thought I'd show you what it looks like and how we put it on.  Just so you know, I do this very purposefully.  I don't do this to make her a spectacle or to let you all just be voyeurs into our lives, but to hopefully make you and others in the world more comfortable with people with all sorts of disabilities, and especially those with limb differences.  Of course I started blogging long before Lamp was even a glimmer in our eye, and I'm just continuing to do something I enjoy.  But I also know there are things I could sort of gloss over when it comes to Lamp, but I hope that by exposing so many people to our sweet Lampstress on line it won't seem so strange to see someone in real life who has similar challenges.  Additionally, I know that I would be curious about some of these things and if I can demystify the process then again perhaps it won't seem so strange.  

So here we go.  This is her arm and the sleeve below is how it attaches to her arm.  The sleeve is made of silicone, so it's soft and pliable and just rolls onto her shorter arm.  Her arm is made of some sort of hard resin with a softer, hand that's shaped in a cupping motion.  Her arm was custom made just for her and it took weeks of fittings and a mold to get it just right.  And the floral pattern you might recognize from here or here.  We could have just made the arm flesh colored, but when the prosthetist asked if I wanted to bring in a cute fabric for her arm in I went with this vintage floral pattern and I really love how  it turned out.   I think it's perfect for a cute baby arm.  



So here she is sitting on her own without the arm--have I showed that yet?--she had to be able to sit on her own before being fitted with for a prosthetic arm.  The general rule is "sit to fit" and so we worked really hard on sitting so she could get fitted as early as possible.  But I still put a pillow behind her so as to minimize the bonks.   


 Here is just the sleeve on her arm.  It's hard to see with the pillow behind her.  


And then the arm just clicks on.  I know it looks like a screw on the sleeve, but it's not...it just clicks.  She doesn't love that part, it's actually sort of hard to click on and you have to push rather hard.  But here she is with her new magic arm.  (Her eyes are all red and sad because she just fell forward and got that little bonk by her eye minutes before this picture.  Sad) 

The hope is what with her new arm she'll be able to grab stuff by using both arms together and to balance and to have something to help stabalize her while she sits.  Also, the earlier she wears an arm the more likely she is to take to it in the long run.  

So there it is.  
Lampy and her magic arm.
Yay!  

If you have any additional questions about her arm, feel free to ask. 

22 comments:

  1. Very cool. What a great thought to pick out fabric for it! I have been showing my little ones these pictures. I love the idea of them getting to understand people who function differently in some ways than they do. I always remind them that we are all Heavenly Father's children and He loves us all.

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  2. You are so kind to educate us. Since you said it's okay to ask, does she need to adjust to her arm before she gets another one?

    Either way, she is absolutely adorable. In the 2nd picture of her she really looks like her sister!

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  3. Thank you so much for being so open! I actually read this post to my 4 year old- you are helping my whole family:) You have a beautiful family!

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  4. Awesome! Way to go Lamp! (Also, it's super cute with that fabric. Neat idea.)

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  5. I love the picture of her looking at her sleeve! So cute! Also, is she kind of blonde?

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  6. what a cute baby.

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  7. You don't know me, but I found your blog way back and I have loved reading it. I commented forever ago, and I felt inspired to comment again. You are such a Pioneer to me in the world of children with disabilities. It is such an important topic. Educating people the way you do is awesome. I am so happy for Lamp and your family for the "magic arm." Your spirit and attitude is such a bright and welcome change to the usual fluff you find on the internet. Thank you for posting.

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  8. Thanks everyone for your comments. I always appreciate them and even if i don't respond to each and every one I always read them all.

    Grandma Honey--as for your question no this arm will not be adjusted before getting a new one. Well at least thats the plan. If it wasn't working for her or something was bothering her we'd definitely adjust it. But barring any unforeseen events she will hopefully have this arm at least a year without adjustments before getting a new one.

    Thanks!

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  9. Oh and Reags--no it's brown but just looks lighter in these pictures.

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  10. That is awesome! Yay for lamp - and I love the fabric you used for the arm - that is so neat. :-) I just loved how she and our mini man were just babbling at each other at church the other day - SO much fun. She is just the cutest!

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  11. I like pictures of her because I like her, but I'm excited to show my sons this process. Like Tiffany and Juli, I think it normalizes and demystifies differences and makes it easier for kids.

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  12. Linda P.5:00 PM

    Thank you so much for sharing Lamp and her magic arm with us! The fabric is such a sweet touch. As a mom to a special needs young adult son, I really appreciate your openness. You are helping to pave the way to more acceptance of people with differences! What does Lamp seem to think about her magic arm? I just want to cuddle her after seeing that sad picture of when she fell forward. Poor sweetie.

    Oh,I am going to a special dinner tonight, and the program is going to be given by a motivational speaker--a young man who was born with no arms! You and dear Lamp will be on my mind as I listen.

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  13. Yay for Lamp!

    I know it doesn't matter, but the first time I saw a picture of Lamp, I didn't even notice her limb differences. All I thought was, "what an adorable baby!" Then I clicked over to your blog and learned more about her. She is such a beautiful little girl. Thanks for letting us get to know Lamp.

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  14. Anonymous7:51 PM

    Lamp, " Lamp the Lionhearted"... (someone called you that on a blog post, and it totally fits!)... How fabulous you have a new arm. And I love that your Mom saw fit to give you a one of a kind, "designer arm"! How fun is that?

    Enjoy! You are a precious little one!

    Love, hugs & kisses,
    G.G.

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  15. Yay, this is great news! Just wondering how she's taking to it so far or if you're introducing it slowly or just popping it on for all her wake time. But I can just ask you that when we chat (hopefully soon!) if you don't care to blog about it. Or whatevs. I do love that you shared this and I think you've done it so tastefully, as you've done with everything all along. You're like, my blogging hero.

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  16. Aww, I'm so happy for her. I can't wait to see what she can do with her new magic arm!

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  17. This is very cool! I would have never thought they could use fabric to make her magic am so personal to her.

    My younger sister has a magic leg(I love this Forest Gump term.) Even so, there is a lot I don't know. I am so appreciative of your sharing.

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  18. I really love all the pics you've been posting of her. She is SUCH and angel baby! Truthfully I'm a sucker for baby pics, I love looking at my own daughter's pics even when she is right next to me! Also, I think it really does make a difference in helping people get comfortable and see different disabilities as normal. Which is a great thing!

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  19. I am also sharing this with my boys and max has a question:

    Can baby lamp hold things with her magic arm?

    He thinks she is awesome!!! (well, we all do)refti

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  20. I love that you're letting us in on this part of your lives. I'm looking forward to seeing all the new things Lamp will be able to do with her magic arm!

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  21. Anonymous2:09 AM

    You and your family are inspiring. Your daughters are beautiful. You may have already seen this but this is full of hope just like your family. www.attitudeisaltitude.com

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  22. adorable prosthetic. super smart to post the process for all of us. i found it enlightening and helpful. God bless your beautiful little family :)

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