Monday, September 12, 2011

Jie Jie's Feet

Before taping, note the toes folded under the other ones.

I've not mentioned Jie Jie special needs much because that is a private part of our life, but over all, she is doing remarkable well. We do have surgery in our future, but it looks like it will be after January 1, 2012.

I'm been meaning to post about Jie Jie's legs and feet. They are visible so it's not something that can be kept private. Jie Jie has a type of club feet called Congenital Verticle Talus. In China, I was told that her feet were like this due to malnutrition. A chiropractor in the USA also confirmed this. Both were wrong, however. It was caused by damage to one of the nerves that runs down her legs during her fetal development. It's a congenital defect commonly seen along with her intestinal defect since the damage to the nerve occurs in the pelvis at the level where the intestinal defect occurs, though there are two other ways for damage to occur.

Due to the nerve damage, the muscles of Jie Jie's lower legs are atrophied to a degree. The lower legs are tiny. Her feet would have been able to be corrected using the Ponsetti casting method or French physiotherapy method as a baby. They might not have been as bad if she'd been given properly fitting shoes to wear all her life instead of shoes that were about three sizes too large.

After the first two months of our life together, the blisters and calluses on Jie Jie's feet were all completely gone. This took diligent care. Her skin is more supple and flexible and no long splits as her toes stretch. Several months ago I began taping her toes, something the orthopedic specialist had never seen, and the result is that the toe ligaments have stretched to normal lengths so she no longer has toes folded under her feet being stepped on when she walks. She is so much more comfortable now! The pain this child has lived with has been excruciating!

Jie Jie cannot walk more than a few blocks before her legs and feet hurt. This will improve with time, but right now, her feet are still turing into a normal position and this means her shins, knees and hips are changing so they ache or are downright painful often. When I first got her, she walked on the outside edges of both feet. She uses a stroller a lot, and still doesn't know how unusual this is for a girl her age. I hope she never finds out. I let her walk the entire time at the local zoo last week and the next day she was limping and complaining of pain. I've had to teach her to tell me when she has pain because it's something she's lived with all her life and she didn't know I could do something about it, like give her pain reliever, massage her, put her in the stroller, etc...

She cannot squat properly and only for a few seconds at a time. She can now hop on one foot pretty well, and barely hop on the other foot. A few months ago she couldn't do this. She cannot stand on tip toe at all. She cannot point her toes of one foot at all. She cannot balance on one foot for very long because she cannot use her toes to help her balance. This, however, I believe can be helped by physical therapy and/or practice. We are still trying to get hooked up with local resources. She cannot pedal a bike very well because she goes backwards on almost every stroke forward and this slams on the brakes. I will be getting her a bike with hand brakes soon, probably for Christmas.

Surgery and/or casting are not options at her age. The French method might be. I'm actively researching this right now. Fortunately, Jie Jie can walk and run and has what medical professionals call good function. Her lower legs will always be spindly and small compared to the rest of her. Just to give you an idea of how small, she wears the same size shoes as the 2-3 year olds in my daycare, with plenty of growing room. She lost about 3" of height in this part of her legs. She might have a terrible time trying to wear shoes with any kind of heel. In her older years, she may need surgery if she experiences a lot of foot pain. However, this mama is massaging and taping like crazy and we've been doing chiropractic care for months, so I wouldn't be surprised if this pays off further, especially if the French method is something she can benefit from.

1 comment:

Anonymous said...

You are awesome.

From homeschooling and working full time, to taking care of your daughter's physical and mental all the other things you do...let me say again, you are awesome. I love reading your blog, I am a big fan! Thanks for sharing all you do for Jei Jei.
Somtimes the simplest things, like foot taping, can be the most effective. Always good to think outside the box.

You are so organized about how you accomplish so much, it gives me ideas about how to organize my thinking in regards to my DD and homework. She has so much homework now in 5th grade I feel like I am sometimes homeschooling her!

Blessings to you and your sweet daughter.