A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

Monday, February 10, 2014

Limb Differences: What is it like to have a child with a prosthetic or AFO?



Prior to adopting Hannah, I wondered what it would be like to have a child with a limb difference.  I mistakenly assumed we'd be bringing home a "poor little waif" who would need lots of help.  

Ha!  


The reality is, for our family, bringing home our girls with limb differences has involved a flurry of medical appointments in the first few months, and then one ongoing issue afterwards.  We'll get to that in a minute. 



There is a little learning curve that goes along with prosthetics.  For example, I sometimes forget that the girls' feet don't get washed with the rest of their bodies.  That's Katie's foot next to Eli's.  Fortunately, whatever that was came off with a diaper wipe.


Hannah is an above the knee amputee, and Katie is a below the knee amputee.  This means that their prosthetics attach differently.


Hannah's leg has a belt that goes around her waist to help it stay in place once it's on, and Katie's pinches around the top of her knee.


Katie's leg has a separate liner that we put on her stump before we slide the leg on.  


Hannah has a liner, too, but hers stays inside the prosthetic.  You can also see here that Hannah's leg bends at the knee, whereas Katie's leg attaches at the knee, and her actual knee does the bending, not the prosthetic.  Notice the matching heel wear above on Hannah's current leg (foreground) and her previous leg behind it?  


Hannah's old leg on the right, new leg on the left.  They have different knee mechanisms.  She's gone through about 3 feet, upgrading size as necessary, on the old leg.  It has also "grown" a couple inches since she got it, so the difference between the two is not as obvious as it would be if she had the original foot, and the original length of the old leg.   


These are stump socks.  They go on the stump of the limb before the prosthetic (or in Katie's case, before the liner).  They come in a variety of sizes and thicknesses.  Counting left to right, Katie is currently using the first ones, Hannah is using the third ones.  There's a little trial and error involved in figuring out which work best.  


Both girls are able to don and doff (put on and remove) their prosthetics on their own, despite having hand differences as well.  I just started letting Katie do her own in the last few weeks.  At bedtime, she undresses and takes her leg and day brace off.  I change her diaper and the sock she's wearing, and she can put on her own pajamas and night brace.  


I was used to the prosthetic scene, from Hannah, but Katie has introduced me to a whole new world:  AFOs.  AFOs are worn, not only by kids with clubfoot like Katie, but also kids with cerebral palsy, and occasionally other conditions, as well.  That's Katie's night AFO on the left and her daytime one on the right.  She's currently in her brace 24/7, aside from baths.  Most kids wean down to nights only by around age 5.



I have talked before about the need to find long socks for her to wear under the AFO.  At some point after that post, I realized that if I folded the top of the long socks down over the velcro tab, the velcro wouldn't get caught on her leggings.  So, for toddler sized feet, Old Navy triple roll socks are the way to go, in my book.  

Now for that ongoing issue that I mentioned at the beginning of the post.  What is the toughest day to day aspect of having a child with a prosthetic or AFO?  

Clothing.

And yeah, that sounds shallow.  But the reality is, this is something I didn't realize would be an issue.  By sharing this with prospective adoptive parents, I hope to help them be more prepared than I was.  

So what are the clothing issues?
1) Hannah's prosthetic is larger in the thigh area than her real leg is.  This means that leggings look lumpy and lopsided on her, and she doesn't fit into girl jeans.  


2) Hannah's knee tears fabric.  These are high quality leggings bought new in October.  Trashed.  I think I've shown pictures here before of the same thing with her jeans when she was younger.  

3) Katie's AFO takes up a lot more shoe than a typical foot does.

Here's how our family deals with these things:  I tend to dress Hannah in boy jeans, skirts, or leggings with long tunic tops, tulle skirts or dresses that cover the thigh area.  She absolutely can't wear tights at all.  I tried putting tights on Katie once, and they look pretty silly on her, too.  Between the lumpy prosthetic on one side, and the lumpy AFO on the other, she does better in straight leg pants than leggings, as well.  

We asked our prosthetist to put a larger foot on Katie's leg.  This means that now she can wear a pair of shoes that are the same size.  Her prosthetic foot is much larger than her real foot, so if we do wean down to where she only wears AFOs at night, we may have to switch to a smaller foot at some point, but we'll cross that bridge when we come to it.  

There you have it, in a nutshell.  The most difficult part of raising a kid with a limb difference is not that they need tons of help or that they're unable to do what their peers do.  It's that you have to think a little before you buy their clothes.  I can live with that.  

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37 comments:

  1. I just had a random thought after reading your post. What if you got the iron-on knee patches, and ironed them on the INSIDE of Hannah's pants to help save the knees? They would also not be as noticeable on the inside and may extend the life of the pants. - Jen D

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    1. :) I feel pretty special to get to be their mom.

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  3. Tell me about when you go to a pool or to the beach. How do your girls manage? Do they wear their prosthetic & take it off poolside/at the beach? Is there fear of getting sand in their prosthetic & causing rubbing issues? How do you clean their prosthetics? Just wipes? Are there things you can/can't use on them to clean them?

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    1. Our daughter has pffd. She is currently using a lift on her shoe and can manage by walking on her tip toe without the lift, but we know that the difference is getting greater & she will require a prosthetic & some type of surgery (possibly rotationplasty?).

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    2. Sand is an issue with Hannah's knee mechanism, so she doesn't do playgrounds with sand. We're not close enough to a beach to have gone yet. When we go to the pool, Hannah takes her leg off when we get there, and doesn't put it back on until we leave. She is a *master* hopper, though. Her full leg is amazingly strong.

      I have used wipes or a wet washcloth on their prosthetics. I haven't been told not to use any harsh cleaners on them, but no one has gotten to them with markers yet, so I haven't had a reason to. We did paint Hannah's toenails once, and the polish faded off eventually.

      Have they talked about slowing the growth in her other leg, in order to prevent the difference from becoming more pronounced? Of course, then she's shorter than she would have been, but it's something to consider. Do you have Shriners near you?

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    3. We do have a Shriners near us (Chicago). We went shortly after we returned with our daughter from China, but we were not impressed. He just said that he couldn't do anything for her & wrote out a Rx for a lift. We weren't impressed. We have a local limb difference clinic we have been to every 6 mo. We did go to RIAO clinic in Baltimore in Dec to meet w/Dr Standard. He is the one who recommended the rotationplasty.

      They predict she will be 5'1", so they do not want to stunt her growth in her longer leg.

      We meet w/our local specialist in April & will discuss with him further about a rotationplasty & see who he would recommend for the surgery.

      We live near Lake MI & camp often, so we are at the beach often - thus, my concerns about a prosthetic at the beach. It is also a long walk from the parking lot to the beach, so I'm not sure hopping would be an option :) She's light enough now that we can carry her (3 yrs), but I'm thinking when she's 16, she probably will not want her mom/dad to carry to the beach! LOL!

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    4. I've heard there are waterproof wraps for casts, maybe something like that would work for the beach?

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  4. Great post! My little guy waiting in Jiangsu has only his arms from above elbow and fibular hememilia. I've had the clothing thoughts already, lol. No long sleeves for him! Very helpful pictures and such. Thanks a bunch!

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    1. Where in Jiangsu? My Hannah is from Taizhou. :) We loved Nanjing.

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    2. Suqian:) Kind of a rare place to adopt from! Oh come on LOA! You understand!!

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    3. I *so* understand! Best wishes for a speedy LOA. Hannah's was 30-something days, back in 2010. Katie's was almost 2 mos in 2013, but Luke's came only 5 days later, so that was nice.

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  5. You are an amazing woman, and have an amazing family. xoxo

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  6. I would love to see your write a entry on SN simultaneous adoption and how you decided to bring 2 home and how you keep going with Luke's special issues. I think it would help so many people to hear the struggles and triumphs you have had or still are having. Adoption is a huge step and a look into your world I feel would help others decide to adopt, adopt 2 at once or take the plunge and adopt again! Advice and info from a seasoned Mom! Which is what you are! :-)

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    1. I've thought about a 2 at once post. Before we did it, I was all in favor of the idea, but now, not so much. I'll keep chewing on the idea, and hopefully sort out my thoughts into something coherent soon.

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    2. I think you have a lot to offer on the subject and shed some light on post adoption issues of all kinds. Not just about Luke but all 3 kids. The experience of medical needs, developmental problems, the dynamics of how the family and marriage take a hit, these are all valid conversations to have! And I think you have lots to say so I look forward to you digging in to give us your opinions! You may just inspire others!

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    3. Thank you! It would be nice to feel like someone could benefit from all the ways I've done things wrong, lol! :) Your words are an encouragement. I appreciate them.

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  7. We are in the homestudy/fundraising process of our first adoption. My husband is a prosthotist/orthotist and we have always felt God's calling to adopt a child with limb difference. We are praying to travel to China early next year to bring our child home :) I am so thankful for your blog and your testimony!! You are a blessing to me as I ride this adoption roller coaster!

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    1. Thank you! And please tell your husband thanks, as well. We love our prosthetist. :) Mr Rick is great with my girls. Best wishes to you as you move through the process (hopefully quickly!).

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  9. Orthotics...we have several sets of them. In our house, "sockshoesorthotics" is said so often it's become one word. One has custom cast foot-only, two have above the ankle SMOs, and one kiddo has one SMO and one SMO-in-a-DAFO. I hate trying to get shoes...and they have to be replaced often because the orthotics shred the insides. My DD will tell you she's the only "normal" one in our family because she doesn't wear orthotics. Note that "normal" is relative because she said this as she was hooking up the adapter for her feeding tube and plugging into her breakfast...LOL She's the one I have to watch clothes for -- trying to find things with the proper "waistline" is rough. She can't wear anything with a raised/empire waist, because then it rubs/catches on her tube. I had bought her some waist-seam-at-the-navel dresses that I thought would last extra-long by letting her wear them as tunics, until then the seam rose accordingly and caught on her tube. She's too skinny to comfortably wear a lot of skirts/pants, and anything one-piece has to be able to either slit the side seam to run the line out or be able to run it out the armpit (sleeveless/cap sleeves are our friend). It wasn't "easy," but it definitely was easier when she was a toddler/preschooler -- before she got an opinion on what she wanted to wear!!

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    1. You really get where I'm coming from, then. It's amazing what becomes "normal" within a family culture. :)

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    2. I joke that the only thing "Normal" in my house is the setting on the dryer!

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    3. There's a line from Incredibles, "Normal? What does anyone in this family know about normal?" that gets used around here often. ;)

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  10. Very interesting. I had never thought of all the struggles involved in having children with an amputated leg. Thanks for sharing

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    1. As Prospective Adoptive Parents research various special needs, what they really want to know is, "What would it be like to parent a child like this?" This is what I've hoped to answer. Not to complain that my girls are different, but to explain that despite being "some assembly required" they're really not that different after all. :)

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  11. LOL! Yes, we have clothing issues, too! Two with SMOs, one with a big head, narrow shoulders, short arms. A supposedly "regular" kid with a very tiny waist and long legs. Another with no waist, extra short legs and an extra wide rib cage. My last has a "slight" difference in leg length, but it's about 1/4" and really shows, IMO.

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    1. It's actually kind of amazing how we're all different. Good thing you sew, eh? :)

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  12. You are a wonderful woman with a beautiful family.

    Thank you for stopping by the Thoughtful Spot Weekly Blog Hop this week. We hope to see you drop by our neck of the woods next week!

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  13. Absolutely beautiful to see those smiles and joy on their faces and KNOW that they are happy and loved! My husband and I have two adopted children from a domestic adoption, high risk, that was here and our "beautiful story". Thank you for your candid honesty and encouragement for so many parents who consider adoption from overseas and showing that it can be amazing, and not about any disabilities but the children. :)
    Blessings to you and your beautiful family!
    ~Heather

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    1. Thank you, Heather! :) We were pursuing foster adoption when we found Hannah. It's fascinating to me how every adoption story is different and beautiful.

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  14. Prosthetic limbs can change your life. They can allow you to lead a normal life. You can do all normal activities, with just a little bit of adjustment.

    http://www.alleghenyoandp.com/

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    1. We love our prosthetist. He takes good care of my girls.

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