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. 


matt ritchey said...

I can't even imagine going through this, man. I'm cringing and heartsick just reading it. I really wish this was a scenario where you either had a week off or SOMETHING that could give everybody a rest.

But, and I know you know this, you couldn't be doing something better for your daughter if you tried.

And I had no idea they had plush Pepe the Prawn dolls. I am so snagging one of those for myself.


Jean Doyle said...

I send you and all your family my love. I will pray for all of you and just want you to know you are doing what great parents do - fight for their children! It isn't easy or pleasant but just want you to know that I love all of you!!!

Donna Nelson said...

Tim -
I'm thinking of you all!!Thanks for the update, my heart goes out to all of you!

Keep the Faith - Donna xo

Chuck Berg said...


This little note is just to share some information I have learned over the years. I am sure you already know this stuff, but I thought I might toss some of this out to see if it helps.
Your blog "Pushing Forward" is spot on. I wanted to let you know that I have been there, and I guess that means I know what lies ahead. It does get better, I promise, but the short story is that towards the end of a lengthening is where everything gets tighter, both you and your wife's stress levels get higher, and you will pushed to your limits.
This is one of those old school moments where a man basically gets to surrender himself (physically, mentally, and emotionally) for the general good of the family. Having been dealing with this for the better part of 14 years I have seen a lot. And it seems that those husbands who understand that their main goal is to make things as easy as possible for their wife and daughter are the ones that get thru this the best. This is the part they don't share in the brochure. The emotional toll on the mother is far greater than they let on, so do whatever you can to give her some breaks, and understand that once this is over, and you guys are back at home things will be better.
In my own case I found that by doing the therapy myself once in a while and letting my wife run errands seemed to help a lot. We also took turns sleeping with McKenna so at least one of us got some good sleep. And good sleep seemed to be a major issue for both of us. And finally momentary distractions.
Taking them on mini trips or vacations to the pet store, restraunts, movies, shopping, ect. helped to get away from the apartment we were living in. You wouldn't believe how many stuffed animals and trinkets we bought to just pass the time. Those few breaks in our daily grind seemed silly at the time, but looking back it is what worked.
I know you just want this to be done, and it will be soon. And once you are back home with freinds and family you will feel all of this burden ease. There is no medal for what you are doing, and there really should be. Your prize comes later when your little one rides her bike, goes swimming, climbs jungle gyms, and all those moments that are yet to come. As your eyes tear up with pride you will look back and know that these months as hard as they are will be well worth this struggle.
Peace and love my friend!! We are all rooting for you!!!

Chuck, Karla, Dylan & McKenna

Trish Amuan said...

i send you all my love!!! i hope emily knows how many of us up here are thinking about her all the time!!! and love her unconditionally. i know its hard now but she will be thankful in the end and it could always be worse. i hope you and your family are getting along alright! im keeping you all in my prayers and cant wait til you guys come back up i will be more than willing to babysit so you and kate can take a night out! tell em i love her and give paige a hug for me!!!!