First appt. at Shriners.. getting cast removed (March 2015 - 3.5 years old)

The last time we had an appointment with Sydney's foot doctor at Primary Children's, we were told that amputation was still on the table and may even be a good option. Since then (about 2 weeks ago), we've been doing tons of research and pondering on what to do. We found some great resources on line and talked to a family here in Utah who has a double amputee child in the family. We had started feeling that an amputation might be the best course of action.
We heard about Shriner's hospital which is a non-profit hospital that runs on donations and we found out that 100% of our health care costs related to Sydney's foot would be covered by them. And it doesn't hurt that they are experts at the conditions that Sydney has. We've been anxious / excited for today so we could meet another doctor and explain our situation and thoughts about the whole thing. We were also excited to find out another perspective about Sydney's foot/leg. Below are some new things we found out at this appointment:

• She currently has about a 3cm difference in her leg (just over 1 inch). Based on some calculations using the x-rays we got from Primary Children's, that difference will grow to approx. 6-7 cm (about 2.5 inches). This is pretty mild relatively speaking and would most likely only require one leg lengthening if we did it when she stops growing (around 12-14 years old).
• Her femur is about 1/2 inch shorter so they would most likely do a minor surgery to attach a "clamp" on the growth plates to slow the growth on her "good" foot at some point by 1/2 inch to correct that problem and ensure that her knees were at the same level.
• Her Tibia and Fibula are short as well but both bones are at least present which is a plus. Due to the shortness in her bones, she has fairly bad knock knee which is where the knee bends inwards and that will need to be corrected as it gets worse. It's a fairly simple surgery where a plate/screws straightens her knee out as it grows.
• She does not have an ACL. Apparently that is very common for fibular hemimelia patients. It shouldn't hinder her functionality though. The body should learn to work without it from what we understand.
• Due to her foot/ankle structure,  she will have a ball and socket ankle which could make her more prone to ankle sprains later in life.
• Now that her casts are off and her Achilles tendon is stretched back out, they prescribed a Ponseti brace (see pic below) to wear every night for the foreseeable future. This will keep her foot stretched in the right direction and help her foot and ankle grow correctly. I'm fairly excited that they gave us these types of shoes because the dobbs brace that we had when she was little was nice for movement's sake, but these look like they will be more comfortable and she will have WAY less blisters with these.

• They gave us some orthotics to use in her shoes which will help correct some of the length discrepancies and allow us to use the same size shoe since her orthotic will lift her foot in the shoe and make it fit more snugly.
• The Dr. feels like Sydney is a great candidate for a limb lengthening due to the mild nature of her case. She has a good foot and ankle (as far as she can tell right now) and the length difference isn't too drastic. She doesn't think it would require too many surgeries over her lifetime to correct this. And she believes her foot and leg should have good functionality when all is said and done.

At this point, we need to keep doing some more research to make sure we don't want to go the route of amputation. If you do a fair amount of research like we have you will find that amputation vs going the limb lengthening route is a pretty big gray area. It's hard to say which will have a better quality of life. We will continue to have appointments every 6 months to re-evaluate and do x-rays, and get new braces for her ponseti brace, etc. We are glad to have some additional information but we still feel fairly conflicted on what's the best path forward. That's about everything we can remember from the meeting with the Doctor. Until next time...:) Below are some pics too!

Sydney playing with the chipmunks before her appt:

  Sydney getting the cast removed. She did great!

Sydney walking around in one of the Ponseti braces. She thinks they are cool shoes...