Sunday, September 7, 2008

Here we go...



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. 
Dammit. 
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. 

6 comments:

Sarah Kristiansen said...

congrats on the blog, cuz, I'm expecting great things! Kisses to my sweet Ems...

Ashley said...

Loving and thinking of all three of you from Boston.
Gently and With Faith,
Ash

aloveteach said...

OK Tim, so you're off to a good start on the blog b/c you made me laugh and cry all at once...I'm such a sap! Anyway, I checked out your pictures that you sent a few weeks ago...Emily is beautiful! One thing is for sure...she is blessed to have both of you as parents! I will be thinking about you and Kate and Emily and hopefully we can all catch up one of these days when we're up in CT. In the meantime, keep trying to convince those kids that eating healthy and exercising is the key to happiness...I'm trying to convince MY kids that playing dodgeball and kickball in PE is not going to enhance their future kids' development as physically active people...I think we both have our work cut out for us:)
Give my best to Kate and love to Emily.
Amanda

marisah said...

Hi Timmy and Kate-
Ash forwarded this to to me and I just wanted to tell all three of you that I have no doubts that Emily will have all of the right decisions made for her with love along the way and will become the courageous, loving person of strenth that she has had modeled for her-
Love, Marisa

AS said...

That Ems is a pistol isn't she?
If she has a bionic leg...would she have to give points to other kids because she can jump too high on the trampoline? If she joins the WGA, would they have to handicap her because she shifts her weight too well from the right leg? That Ems! Always an overachiever! Wonder where she got it? All will be well with your gorgeous child. I trust you both implicitly. Also nuts about you. AS

Sarah Kristiansen said...

love the new banner, cuz.....