Tips

This page is a work in progress! My goal is to have a comprehensive list of tips and hints that have helped us get through the leg lengthening process.  Such as:

A hand held shower head  for leg washing is necessary in my opinion.

Generic q-tips for pin care (the pricey ones are too soft and get fuzz stuck on pin sites).

Get as many supplies from the hospital as you can before you go. Once they open a package of anything for your child they can’t use it on anyone else so you may as well take it home.

Medical tape is helpful for keeping struts form turning on their own if you child has a taylor spacial frame.  (Nicholas has only had the TSF).

Playing stillness contest during x-rays has made it fun for Nicholas and he almost never has to redo one.

Nordstrom offers a split-size service to those who have a difference of at least 1 ½ sizes between each foot. Split-size shoes cannot be ordered on their website; however you can place an internet order over the phone by calling 888.282.6060, 24 hours/day, seven days/week. This service is also available in stores.  The shoes can be pricey but it is helpful. Most of the time we buy 2 pairs of shoes at payless.

Often a shoe repair shop will charge less for adding a lift to as shoe than a prosthetics and orthotics place.

Instructions for making covers and adaptive clothing for those of us with little sewing experience coming soon.


11 thoughts on “Tips”

  1. Not trying to rush you but I do keep checking if your tips for adaptive clothing for those with little sewing experience is updated. Just wanted to let you know I am very interested! If you don’t have time, no worries!

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    1. For the non sewers like us I think big snaps are really helpful. Some people can add panels to pants and the you don’t need fixator covers but I think making covers is easier. I am going to write to some friends who sew and see if they can type up directions!

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  2. Have you been to this link? This has some great tips for modifying clothing. I love the “underwear velcro” idea.

    http://global.smith-nephew.com/us/patients/CLOTHING_MODIFICATIONS_14820.htm

    p.s. I just found your blog today. I’m so glad to have found you. My daughter was diagnosed with FH and a short Femur at 5 months old (she is now 14 months). When she was born there was a very slight LD but it took several specialists and xrays for her diagnoses because she has a completely normal leg and foot. Amputation isn’t an option in our minds so we will be doing Limb Lengthing. They have told us that without LL she would have a 5.5inch LD when she’s fully grown. Anyway, I’ve spent that last couple of hours reading your blog and clicking on links. Thank you so much for all of your time spent doing this. It has helped so much already!

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  3. Ha, I spent a couple hours modifying a man’s cammo pant leg into a fixator cover (used a seam ripper to open the seam, then sewed it back up with a sewing machine, added a couple inch long velcro strips to both sides of the cover, and put a fold at top and bottom to run a shoelace through to tie closed at either end – pictures are here at http://conni60640-ivil.tripod.com/id28.html … After all that, I found that you can buy a “buff” on the internet that stretches nicely over the fixator and comes in a zillion colors and patterns to please any child and got two of them 🙂

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  4. For a child with FH, now 18 months old . If we wanted the lengthening of the leg.Family live in other country. no insurance. Is there any charitable organization or foundation that can sponsor her. Can you tell us the cost of each surgery.? Thank you so much for sharing your story. It is a very difficult situation. Family need to make the rt decision for her.

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  5. For women with a significant shoe size discrepancy (I have a 4 and 7) looking for ‘adult’ shoes, try Vaneli. They sell really small sizes. I always call ahead of time and have them pull what they have in both sizes to make the process smoother. Also, they always price the second pair half-off for me.

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  6. Hi, I just came across your blog. I was born in 1950 with two club feet and FH. Leg lengthening surgery was very rudimentary back then and over my first eleven years I had four operations where screws were inserted above and below my knee to encourage growth. I’m not sure how successful it was as today I have a 3.75 inch discrepancy. But it never held me back. I played a ton of sports, most very well winning HS varsity letters in tennis and baseball. Today I continue to play tennis (no elevation) and golf (with elevation). My only sports failure was breaking my FH ankle the first time I went down a hill skiing. Dumb move as it ended my HS basketball career! I’ve been married for 37 years to a wonderful woman who saw past my FH and we have three very accomplished children. I’ve had an incredibly successful business career. Nothing ever held me back. The key for me was having parents who gave me the freedom and encouraged me to push the boundaries of what people born with FH can do. They KNEW I was going to break my ankle skiing but they let me try and they never said I told you so. They taught me the difference between being stubborn and being determined. Your son will be told by many what he can not do but he needs to know that nothing is impossible if you do not listen to reason. Good luck!

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