Wednesday, July 25, 2012

Pushing forward.

At no point am I on record as saying this would be easy, but, well...I can't really finish that. I'm sure more optimistic people would say something to the effect of "with all this horseshit, there's gotta be a pony in here somewhere!" I'm working on it, but I ain't that guy.
Don't let me mislead you. Emily is making great progress. That top picture was taken Sunday, July 22nd. That's our girl with about a one-and-a-half inch discrepancy. More than two inches of new bone since we started turning that pin on May 21st. While we recently had to slow down our pin turns (Emily was starting to lose flexibility in her quads and hamstrings) that's been the extent of our hiccups. Compared to some of the people we've met and the stories we've heard, she's doing amazingly well.
Having said all that, I will go on record as saying this sucks.
Allow me to get a little selfish here. I have never been more physically, mentally and emotionally drained in my life. Sleep is irregular at best. Stress is giving my skin teenage flashbacks. I'm getting used to the headaches. I've never drank so much coffee in my life. And four times a day, I hold Emily's hands and try to talk her down while she screams and cries roughly eight to 12 inches from my face.
Four fucking times a day.
Meanwhile, Kate is the one doing the actual work. She physically holds Emily down with a knee across her back as she stretches her right quad. She intricately cleans the pin sites with the skill of a surgeon...only in this operation, the patient is very awake, very loud and very mobile. Currently battling a nasty cold, Kate looked at me today and said, "I just want a day off." Sure, let's book something around...ooh, how's Christmas?
While it's hard to argue with results, it is certainly difficult to focus on the big picture when the daily grind is so very taxing. Emily is on to us. She knows when we put electric stim pads on her leg, she's got about 30 minutes before we're going to stretch her quad. She knows when we pull in to St. Mary's that it's time for PT. When Kate pulls out the bin of pin site cleaning supplies, the whimpers begin immediately. She tries to say she doesn't like going in the ocean (until she starts bobbing around in the waves...then she can't hide the joy) because she knows the ocean is followed by the pool which is followed by pin site cleaning. She's been doing this for two months. She's not stupid.
Every parent is pushed by a kid testing his/her limits. Where do you draw the line? Which battles do you choose to fight? Today, she stood in the corner of the lobby and flat out-refused to go in the room for physical therapy. It was a 15 minute-stand off. She eventually went, but this is uncharted territory. We're not arguing about a skirt that's too short for school or a concert there's no way in hell she's going to and no, I don't care what Amber's parents let her do. Four times a day, we're just working this kid over and she doesn't have a say in the matter. Come on,'ll be good for you come you can't see the end game, kid? Huh? How about a little perspective?
The good news is, the rest of the day (what's left of it, that is) she's in pretty good spirits. She's probably watching too much TV and her diet sucks (she's losing weight...apparently quite common for Paley kids) but...I ask again...where do you draw the line? Is a chocolate frosted donut going to get her through the afternoon? Well, goddammit we're getting a chocolate frosted donut.
And there is an end in sight. Met with The Man last week and he was pleased with her progress, giving her about six more weeks here in Florida. The party won't stop there, as the daily PT triple sessions will continue for another few months until her fixator comes off. But at least we'll be home.
At this point, I'll take anything I can get.
 Emily gets weekly prizes for being good. Her last two choices? Animal and Pepe from the Muppets. She respects the classics!
 Getting face to face with a turtle at Loggerhead.
Some sisterly love.
 I think Paige is gaining the weight Emily lost. And then some.
 Her new 3 cm lift. 

Friday, July 13, 2012

Grinding away.

I tried making a list of pros and cons to sum up our current adventure and I failed miserably. It came across as such whiney horseshit. Obviously, the first big negative on the list was the fact that Kate and I make Emily scream and cry a minimum of four times a day as we care for her pin sites and stretch her out. After that...well, what else is there? Ooh, I wake up with headaches from grinding my teeth all night. Wah, I don't have time to work out. Boo hoo, I'm not sleeping as much as I'd like because one of my two children usually wakes up in pain during the night. What's their excuse? Paige is six months old and cutting teeth so...yeah. And Emily? Well, she has 10 stainless steel pins DRILLED INTO HER LEG. Maybe it's that. Or maybe it's because of the small bar we install on this device each night which keeps her leg locked straight. Can't believe she can't get comfortable. Softy.
But there are positives. I swear. The ocean view from our condo is awfully nice. Perhaps most importantly, we're making progress. Real, visible, measurable progress. If my math is correct, as of yesterday we have grown 5.3 cm of new bone since May 25th. For the metrically impaired, that's just under 2.1 inches. That's right. Wow. 
Even more impressive is that she has maintained a necessary level of flexibility and range of motion during that time (mostly due to Kate and a team of physical therapists manhandling her on a daily basis.) No small feat when you consider the stress on her muscles, ligaments and tendons. If we can keep this pace, she would hit 8 cm on August 9th which just so happens to be her 4th birthday. While that seems unlikely (it's rare for kids to continue growing bone at this rate. Usually flexibility wanes, pain increases and a slowdown is required,) it would be a nice birthday present. Still, I'm sure she'll want toys or something. Just like a four-year old...completely missing the big picture. 
In the end, that big picture is what matters most. The daily grind, the small hiccups, the everyday struggles...all of that will all be washed away if we can just continue to maintain the forward momentum.