The plan for Amy?
I have no idea.
Once her orthopedist said that her condition was out of his area of expertise, he referred us to Shriner’s Children’s Hospital. They have her medical records, and should get back to me within the next 24 hours. Assuming they accept her case, I should be able to make an appointment at that time. Until then, I can only make guesses. I can guess that her doctor will want her in a customized Knee-Ankle-Foot brace to keep her from breaking it. No, bracing won’t straighten the bone, but it CAN keep it from worsening, and as growth occurs, the curve can straighten some. Later, possibly a major reconstructive surgery and rods inserted into the bone at 3, or 5, or when a break occurs. If the surgery is successful, then once it’s heals (using bone grafts or some other method) she’ll be back in a brace. If a break happens, back to square 1. If not, then she’ll be in a brace until she stops growing, (or forever) though there may have to be other surgeries for limb lengthening, to correct deformities… It will be a very long road she has to travel.
The main thing we want to do is focus on doing what we can to protect and save her leg. But if she comes to a point where the pain is too great, and too many surgeries have failed… We are willing to sacrifice her limb to give her a greater quality of life. Hopefully, she will be a part of that very adult choice. Even more hopefully, we’ll never have to make that choice.
Today, I got a phone call from her current orthopedist. He had reconsidered his position, and asked if we wanted to have a cast put on to protect her leg while we wait to begin treatment. Since I’ve been beside myself every time she fell, or stomped her feet… I was a big fan of this plan.
She picked out a purple cast, and now she is STYLIN! Not to mention SAFE. We got her up on her feet, and after a short-lived fit, she accepted the cast, and busied herself playing with magnets at the doctor’s office.
I did have to turn her car seat around so she faced forward, so that was lame. But you gotta do what you gotta do. LOVE that smile!
Anyways, that’s where we are today. She’s in this cast for the next 4 weeks, unless we get into Shriner’s first. If we do, cast comes off, and she gets her brace. If she doesn’t, in 4 weeks this one comes off, and a new one goes on. In the meantime, we are working on a referral to see a different specialist about her Neurofibromatosis to make sure that there are no more surprises other than her leg. I had also hoped for a referral to Stanford to get another opinion, but he talked me into listening to the doctors at Shriner’s first, THEN getting a second opinion. That’s hard to argue with, so we will play his way.
So, for now, that’s where we are. We’re doing everything we can to give her her best chance. As for Amy, she is absolutely stunning in her adaptability. Look at her go!