We went to meet with the local prosthetic guy. He says his company can help us work with pediatric upper extremity experts to get Jordan the best prosthetics that she needs. It will probably take a lot of letters of pleading with the insurance companies, but I think we'll get her what she deserves and needs to help her function in every way imaginable.
The down side: Her amputation was right above the elbow... So fitting a prosthetic with a functioning elbow will be very challenging.
In the case of a traumatic amputation, the doctors get to decide where to amputate — giving the patient the easiest fitting for a prosthetic. Jordan didn't get that option and there's no way I would want to amputate more of her arm just to get the perfect fit. So we're just going to have to work with this extra challenge. In the end, she may not even want a prosthetic and not even care that she's missing an elbow... or a forearm... or a hand.
So our preliminary plan is this: Get a passive prosthetic between three or four months of age. I'd like to aim for a myoelectric prosthetic (that's the kind that is operated with her muscle tone at the tip of her arm) by age one. At some point early on, we're also talking about a more manual shoulder pulley-type prosthetic so she has an arm that can function in more rugged environments — like in wet conditions or somewhere where there is no electricity. Eventually, there will be needs for arms that help her swim or do other activities... But I'm guessing that kind of stuff will be out-of-pocket expenses. We'll worry about those kind of prosthetics when she's older.
You know, I'm okay with Jordan's arm... I know she is going to live a normal life and she is gorgeous and perfect in every way. But I've noticed I'm hiding her arm in public. I shouldn't. I know I shouldn't. But I'm just not ready for that first comment: "Ohhhh! A baby! She's so sweet! She's hiding her arm... Oh dear! She doesn't have an arm!" And then the stranger gets uncomfortable and I'll have to explain what happened in the womb to another person. I should just get it over with and start getting used to the conversation before we're visiting my parents in Florida and can't hide under a warm winter blanket. But I guess I'm just not ready yet.