Our beautiful daughter Emily was born August 9th, 2008 with a rare condition known as Proximal Femoral Focal Deficiency. Because we are fortunate to have so many caring family and friends, I figured this would be the easiest way to keep everyone in the loop.
Now, my experience with blogs is minimal. My cousin Sarah has a blog and it is creative, well-written and always allows you to walk away feeling pretty good about life. I aspire to head in that direction as opposed to the majority of sites penned by ham-fisted, narcissistic d-----bags. I also aspire to limit my use of the word d-----bag. I make no promises.
My point is, I want this to be about her. I will therefore try NOT to be pessimistic, skeptical, self-absorbed, opinionated, uninformed...um...long-winded...unfunny...you get the idea. Shut up.
Let's get to it. Remember the point of this? Emily. PFFD. Right.
To those of us without a strong medical background, PFFD is a completely random condition where a child's femur (or thighbone...I'm not dumbing it down anymore. I can't. I won't!) stops growing or fails to grow at all while in Mom's tummy.
Shortly after Ems popped out, we were told it looked like her right leg was shorter than the left, which was probably the result of hip dysplasia and not a big deal. When the doctor sat down in front of us two hours later, it was clearly a big deal.
The next 48 hours were a bit of a whirlwind emotionally as we got to know our new baby while trying to stay out from under the cloud hanging over us. Our already fragile state was not helped by a visit to the orthopedist who, in telling us we needed more information before any decisions would be made, said that amputation and prosthetics would be a possibility.
Fast forward to Friday, September 5th. An ultrasound was done on Emily's leg and our doctor tells us that it looks like we'll have a number of options. Her hip joint is looking good and, if things develop, we may be able to surgically lengthen her femur.
Naturally, there are pros and cons to this. The downside (of course I would list that first...get used to it.) would be that this process involves a number of painful surgeries followed by extensive rehab. The upside...two good legs.
Our worst case scenario would be that her femur does not develop anymore and her hip joint takes a turn for the worse and this bionic leg lengthening process fails to be a possibility anymore. Should that occur, we would have to amputate her foot, construct a working hip and fuse her tibia, fibula, knee and femur to create one solid thighbone. Picture a regular leg with an amputation just below the knee.
Here's the thing. Either of these scenarios make it possible for Ems to jump on a trampoline, go to the waterpark, play sports...pretty much do whatever it is she wants. She may never be able to jump all that high off her right leg, but, if she was going to take after her pops, that wasn't going to happen anyway.
I won't go biblical and begin quoting Psalm 23 to you, but Kate and I are well aware that this will not be an easy road. There will be difficult decisions. There will be struggles. But we are surrounded by the best people. I can't imagine going through this without our family and friends. Emily will always feel loved and smart and beautiful and strong. And that is because of each and every one of you.
Her next appointment is December 5th. Until then, we are going to enjoy each moment. Cuz this is one awesome kid.