Look Mom! No KAFOs!


So yesterday afternoon I put Laelia on the potty and stepped out of the room to give her some privacy. A short time later Laelia starts screaming, “MAMA! MY LEGS! MY LEGS!!” I panicked and ran back as fast as I could. Visions of her falling off the toilet or twisting her leg filled my head. As my friend, Anna, put it, “Elapsed turnaround time to Mama freakout– .3 seconds.” :)  We have a chair placed in front of the toilet that her legs rest on so really there’s little chance of these horrors actually happening. It turned out she was just sitting there staring at her legs. I asked her what on earth was wrong and she said, “Nothing’s wrong, Mama. Look at my legs! They’re so straight and beautiful!” It was the first time she had just sat there (with her pants pulled down) and stared at her legs. It shocked her to see her body so straight! She used her hands to press one knee down (which flattened her leg against the chair) and said, “This one is very straight, see?” Then she pushed on the other knee and said, “This one is also very straight!” Then she sat there playfully rocking her feet back and forth in a happy little motion while starring at her legs. “They are beautiful. They are straight like yours Mama!”

The whole vain display was the most precious thing I’d ever seen. :) She simply cooed.

But later that night is the real story. Once again the scene takes place in the bathroom. It started out an accident. I’ve not been getting a lot of sleep lately as my husband is up every three or four hours and my daughter is up once or twice a night with AFO issues. Somehow miraculously that still leaves me around four or five glorious hours of sleep a night. But last night we were running late to bed and it was cutting into my precious sleep. I was exhausted but Laelia had not brushed her teeth yet. Like a zombie I carried her to the bathroom and stood her up as we usually do on the chair so she can reach the sink. She was fussier than usual so I kept an arm around her waist thinking she was just scared of the height or the wobbly chair (or… something… whatever… tired). Eventually she said, “Mama, are you holding me or am I standing?” And the sound of awe in her voice was just different enough for me to realize this was a big moment for her. I woke up enough to see that Laelia was not wearing her KAFOs (knee braces)!


I have never stood her up in only AFOs that way, especially not with the hardware in her poor knees. I simply hadn’t noticed! She was merely in AFOs which only stretch her feet and do NOT hold her knees in place! Good thing I didn’t let go! My arm immediately tightened around her waist with the realization.

Okay for one thing we did not think it was physically possible for Laelia to stand without knee braces because she’s missing the muscle in her legs to hold her up. Her knees have always buckled under the weight of her own body. Even when I thought of my girl walking around one day I saw her in knee braces. (I know adults with AMC who wear knee braces every day!) But she seemed pretty steady so I said, “Laelie sweetie, do you want me to let go?” She hesitantly said, “Slowly please.” So I lowered my hands to her hips and then slowly lifted my hands off her until she was standing by herself! And she just stood there frozen for the first time ever without knee braces. Whoa! I hovered over her worrying that her legs would buckle any minute. In fact bending her knees is still really uncomfortable for her (even though she can do it) so I was scared she would get tired or weak then fall and bend them and scream her head off. But after a solid minute of hovering Laelia slowly became unfrozen. She started to test out her legs a bit. Then she started to stand up even straighter (on her own!!!) instead of  draping  herself over the sink. She raised herself slowly all the way up until she could see her little face in the mirror. She then said, “Who’s that standing? Who’s that pretty girl? Hello Laelia!”  Hahahahahahahahahaha!

My funny girl!

My theory is that when her knees were bent at around 40 degrees it was really hard to stand up. (Try it yourself! It’s hard!) That bend takes so much more muscle! I take for granted the fact that I can lock my knees and just stand for long periods of time with ease. Now that Laelia’s knees are straighter (even though she’s still 10 degrees shy of perfectly straight) she can lock them in such a way to make standing easier. So with the same amount of muscle she does so much more with it!

I’m so thankful we switched from San Diego doctors who have a soft tissue approach (which would weaken her) to Dr. van Bosse who has a surgical approach based on moving/aligning the bones. AMC kids have such little muscle as it is, we don’t want to lose it! We went through a couple of soft tissue surgeries (with a surgeon who said he did not believe my daughter would walk) before finding Dr. van Bosse in Philadelphia. Dr. van Bosse immediately showed me how osteotomies would make her body align correctly. Because of his vast experience with kids with arthrogryposis I didn’t just have to take his word for it, I saw x-rays of kids whose lower bodies looked just like my daughter! Slowly we began to trust a doctor again. By the time knee surgery came up we were ready. And now she is beautiful and straight and functional. (And still very vain. ;))

So thankful!

7 Responses to “Look Mom! No KAFOs!”

  1. Lynn says:

    Incredible. So happy for you. Speechless.

  2. Kristin says:

    Amazing.. She has every right to be vain that girl :).. she is such a doll and inspiration.. you go Laelia :) and I hope mommy gets some sleep soon…

  3. Cheryl Schalk says:

    ok, crying again! Love you guys.

  4. Linda Wesley says:

    !!!! I love the faces! What a silly kid. LOVE her.

  5. Sue Peppers says:

    I read this aloud to Cliff and cried my eyes out. Good tears. Happy tears. Joyful tears!!!!!!!!! I love her laugh. I love her spunk. I just adore your sweet little one.

  6. Anna Oatman says:

    This post made me cry! She is a beautiful girl and she’s gone thru more than enough to be vain about her gorgeous straight legs!!!!! Her faces are so stinking cute :-)

  7. Jennifer says:

    Love her “self talk” – who IS that pretty girl!? Indeed! She is amazing.

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