Thursday, July 29, 2010

At least the surgeon seemed competent

Adam, Morgan and I were on one side of a thin curtain, the emergency room staff on the other. We could hear them whispering back and forth, seems I was the talk of the ER. Even as an EMT crew rushed someone in on a stretcher, they were stopped by one of the female nurses saying "You've gotta hear what happened to this gal". Though everyone was well aware of what had happened, one by one the entire staff poked their head through the curtain to hear the story for themselves.

"He hit me with a lawn mower."

"No, it wasn't on purpose."

"No, it wasn't running."

"The blade didn't touch me, the front of the mower just bumped into me."

And literally every single person who heard the story responded with some variation of "THAT'S BIZARRE!"

The surgeon arrived, gave me a local anesthetic and began poking around with tweezers. After a quick inspection, he concurred that my achilles tendon was completely severed and had, in fact, retracted back up my leg and was sitting about three inches above my ankle. I needed surgery. Soon.

He began asking questions about my medical history and when I told him I have CF, I was surprised at how knowledgeable he seemed about the subject. He is, after all, a foot surgeon. But, he asked about my PFT's, my current medications and the breathing treatments and exercise that I've been doing to stay healthy. Turns out, he is very close to a family whose two children also have CF. That, coupled with the fact that he never once yawned in my presence or tried to make my incision talk, made me feel a bit more at ease. I was fairly confident that this guy knew what he was doing.

My instructions were these:

Go home.
STAY OFF THAT FOOT!
Don't eat or drink anything after midnight, except in the morning when I would be allowed a couple sips of water to take my antibiotics and pain medication.
Return at 6:00 the next morning for surgery.

The very last thing we discussed before I left the ER was how long recovery from this particular injury usually takes. Dr. Z's estimate: three months on crutches, followed by some pretty intense physical therapy. And it could be up to a year before I make a complete recovery and have full use of that foot again.

I left the hospital thinking well, that's just great. Now answer me this: how am I going to take care of my baby, when can I go back to work, and what in the world am I going to do to keep my lungs clear if I can't exercise AT ALL for three (or likely several more) months?

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Next? The surgery.

Tuesday, July 27, 2010

It all started at Home Depot

This past Sunday, Adam and I went to Home Depot to purchase a much needed lawn mower. (Adam has been mowing with an old fashioned, motorless, push-it-and-the-blades-spin mower for a couple years now.) After walking up and down the aisles a few times, carefully eyeing each mower and inspecting all the parts, he finally made his decision. We asked the sales associate if they had that mower in stock and he informed us that the only one of that particular model they had was the display. He also assured us that not only was the display for sale, but it was in perfect condition and, as an added bonus, it was already assembled.

A few minutes later, we were on our way out the door with our shiny, new, already assembled lawn mower. Just as we were walking out of the store, the security alarm went off. Apparently the cashier had forgotten to take the security device off the mower when she rang us up. No big deal, we had the receipt in my purse. Except I was so startled by the alarm that I stopped dead in my tracks when it started buzzing, and Adam...well, he just kept walking and BAM! The lawn mower ran right into the back of my ankles.

I immediately reached down and grabbed my left ankle, pressing on it firmly. A wave of nausea washed over me, and for a few minutes I was struggling to stay conscious. There were three Home Depot employees who witnessed the accident and they were soon by my side with alcohol wipes, gauze and band aids. When I finally dared to take my hand off and actually take a look at the wound, I discovered that there was a piece of flesh about the size of a dime missing from the back of my ankle, but surprisingly there was harldy any blood. I was starting to think that maybe this wasn't a big deal--that I was just over reacting-- but then I tried to move my foot and...nothing happened. We decided that it was probably a good idea to go to the emergency room, just to get checked out. As I was sitting at the admissions desk holding my ankle, I really wasn't in very much pain but when the receptionist asked my birthday and I honestly couldn't remember, I realized I was in shock!

A few minutes later, I was lying flat on my stomach on the emergency room bed when a gray haired doctor walked in, yawning. He carelessly ripped off the bandage that I had placed over the wound and when he saw the laceration he nonchalantly said "Yep. That's going to need a stitch or two". Then, being the highly paid professional that he is, he reached down, pinched either side of my cut and began opening and closing it like a mouth, saying "Helloooo" in a cartoonish voice.

Seriously.

More paperwork was filled out--medical history, medication charts, etc--and I got a tetanus shot while the doctor was preparing his surgical tray. That's when I finally told him that my biggest concern was that I couldn't move my foot.

"Really?" he asked (because a lot of people joke about that type of thing in an emergency room?)

"Really."

He lifted my leg, moved it around, squeezed it a bit, let out a sigh and quietly said "Ooooooh."

"SHIT! WHAT?"

"We need to get the orthopedic surgeon in here," he explained. "You've severed your achilles tendon."

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Stay tuned for part two.

Wednesday, July 21, 2010

Today is a good day

Three years ago today, I stared into a full length mirror in my grandmother's little bedroom as my sister made the finishing touches on my hair, securing my veil with bobby pins.

Three years ago today, my mom helped me into my wedding dress and held the train up as we shuffled outside.


Three years ago today, I walked outside in full bridal attire, looked at my soon-to-be sister in law, and we both cried. (The tears certainly didn't end there.)

Three years ago today, my dad led me down the aisle as we were accompanied by my cousins playing the traditional wedding march on the piano and violin.


Three years ago today, under an arch of daises in my grandparents backyard, I looked into the eyes of the man I love and, before our friends and family, we recited our written wedding vows.  

Three years ago today, we promised to love without reservation, to be each other's constant friend and faithful companion, to honor, respect, and cherish one another.


Three years ago today, I assumed his last name and he claimed my heart and soul.

Three years ago today, my dad had to conceal his teary eyes behind tinted glasses when he whispered along with the lyrics as we danced. 


"How could that beautiful woman with you be the same freckle-faced kid that I knew, the one that I read all those fairytales to and tucked into bed all those nights?"

"I prayed that she'd find you someday, but it's still hard to give her away, I loved her first."



Three years ago today, my sweetheart held me close and we danced together for the first time as husband and wife.

Three years ago today, I became a stepmom.


Three years ago today,  I stopped living for myself.

Three years ago today, I married the love of my life and I'm still just so incredibly happy to call him mine.


Today is a good day, indeed!

Saturday, July 17, 2010

Clinic visit...and more testing?

I had a clinic appointment earlier this week and, first things first (is that a real saying? After I typed that I started second guessing myself...) I'm very happy to say that my PFT's are still very close to what they were in April. A big improvement would have been nice, sure, but when you take into consideration the health scare I had last fall, plus the fact that CF is a progressive disease, I'm definitely satisfied with maintaining a decent lung function at this point.

Something that was brought up during my appointment is the fact that, as many of you already know, Ultrase didn't get their FDA approval, so I'll be needing to switch enzymes. (For those of you who don't know, most CFers take enzymes each time they eat to aid in the digestion and absorption of food and nutrients. There are several different brands of these enzymes and they all work differently in each individual. Once you find a brand that works for you, it's generally a good idea to stick with it.) I've been on Ultrase forever! At least the last dozen years or so. I'm definitely not looking forward to experimenting and figuring out which approved brand and dosage will work best for my body. Fortunately, we knew this would likely be the case, so at my April appointment I was advised to get as many Ultrase as my pharmacy would allow. I was able to get an extra (almost) three months worth of enzymes, so I won't need to make the switch right away.

There was another issue that I wanted to be certain I discussed with my team, but before I tell you about it let me back up a bit. When I was pregnant with Morgan we were obviously concerned about the possibility of her having CF, so Adam had the 32 gene mutation panel test done. He was NOT found to be a carrier of any of those mutations and at the time we were both satisfied with that. However in the months since then, I have become so much more educated about this disease (thanks in large part to all of YOU) and after discovering just how many mutations exist (somewhere around 1500) I'm no longer satisfied with the minimal amount of testing Adam had.

I've expressed my concerns about this in the past and they have been completely dismissed with a quick "she's growing fine" or "you're just being paranoid". The truth is, I've tried to convince myself of the very same thing time and time again. I've tried shutting that door and locking it, but my mind always finds a way to pick the lock and before I know it the door is wide open and I find myself wondering again, WHAT IF? Recently, Morgan's doctor and I were discussing which antibiotic to put Morgan on this time and I felt it again, this voice inside me saying something isn't quite right, here.

She has been sick enough to require antibiotics five times in the past nine months. Granted, most of those instances involved ear infections, but not all of them. Her lungs have also been compromised by infection two times, one of which required the use of antibiotics and steroids before she finally started feeling better. Sure, she's growing fine (some have used the term "chunky") and it's true that kids just get sick sometimes, but this particular kid also happens to have a mother with a genetic disease. A disease whose symptoms are not entirely unlike symptoms the child has been showing. Doesn't it make sense to look into that a little further? For a mother's peace of mind, at the very least? I brought this up at clinic again and this time I was a little (maybe a lot) more pushy about what I wanted. Although I didn't get definite answers, I was finally able to get pointed in the right direction. 

In early 2009 cystic fibrosis screening became a mandatory part of the newborn screening test, meaning that every child born (in a hospital) in the state of Utah is now tested for CF at birth. This particular test screens for elevated IRT (immunoreactive trypsinogen) levels which is very common in infants with CF. The test is extremely sensitive, often producing irregular results for even healthy babies, so if the original test comes back irregular, a repeat screen is collected after 7 days and prior to 6 weeks later. (The elevated levels of IRT in infants with CF decrease to normal after the first several weeks of life, so there is a time limit for this particular form of testing.) If there are two irregular test results, the infant is sent in for a sweat test. Two irregular IRT screens and one positive sweat test warrant a diagnosis for CF. This method of testing costs considerably less than genetic sequencing or the Ambry (a very extensive test, which not only determines if someone has CF, but also identifies which mutations they have) and although it's not as definitive, I feel like it's a great start. I will be taking Morgan in for her one year old check-up in a few weeks, where I'll ask (if necessary, demand) to see the results of her IRT screen and then we'll decide the best course of action from there.

Other than that, there isn't much to report. It was nice to finally have someone actually hear and validate my concerns about Morgan, and also nice to see that my numbers have stayed up. Next time, they'll be even higher...

Wednesday, July 14, 2010

July 2010 Newsletter: 11 months

Dear Morgan,

This month marks the return of the dreaded ear infections plus the appearance of a strange new virus that caused you to fever for 48 hours straight and throw up any time you tried to eat. When people say there's nothing worse than a sick baby, they aren't kidding. I imagine there's nothing in this world that can make a mother feel as inadequate, as helpless, as knowing her child is in pain and not being able to do anything about it. There were two nights that were especially rough for you, when all I could do was hold you in my arms, rocking you and stroking your sweaty forehead as you whimpered for hours. I have to be honest, I hated those nights. They were sad and scary and frustrating, and it pains me to know that I can't prevent things like this from happening to you; that there will be many more sleepless nights like these in the future.


But there have been a lot of fun things this month as well, like when we took you swimming for the first time. To say that you liked it would be a gross understatement. Besides the fact that you got to play in water--something you've loved from day one--you were completely surrounded by other kids playing and splashing, and you simply LOVED it! For just a second, as I first set you in the water I thought you might try to jump out of your floatie and join them, but you were content to sit back and observe their play, floating around completely relaxed, your half-painted pink piggies dangling in the water... the very essence of chill.


This past month you've learned how to do several things on command like clap or stick out your tongue. Unfortunately, get Mama a Twinkie is not one of those things. You also dance when asked to. Or when you haven't been asked to. Or, even when you've specifically been asked to STOP DANCING because do you have any idea how difficult it is to sleep when you're sitting on the bed rock-and-roll-head-banging like a crazy person? You are a dancing fool, Morgan, and anytime you hear any kind of beat (and quite often when there's no music playing at all) you start shaking that little bum of yours. However, considering the genetic hand you were dealt, I hope you don't get your heart set on a dancing career. Musical or sports-related talent isn't in the cards either, kiddo. If you really want to excel in an enterprise, something that involves consuming an entire can of vienna sausages in 6 seconds or utilizes the ability to wrap both legs behind your neck would be an appropriate venue to pursue.


My favorite recent development of yours is...are you ready for this? YOU TALK! I don't just mean the incessant jabbering and babbling you do, when you go on and on then look up at your dad and I with a proud grin as if you've just recited the entire Declaration of Independence. No, I'm talking about words. Real words! Words like hi and dad and MAMA! Morgan, I had no idea that two short syllables could completely melt my heart, but every time you look at me and utter that one little word, your dad has to get a shovel and scoop me up off the floor. We've been doing sign-language (just a few words) with you since you were about five months old, and last week you signed back for the first time. You used the sign for "milk" which means that you want to nurse. The first time I saw it, I though it was a fluke. But sure enough, you made the same sign multiple times the next day and now you do it on a regular basis, like it's totally no big deal... like it's something you've been doing forever. The fact that you're learning to communicate with me, I mean really communicate--not just point at what you want or scream until I guess what you need, but actually communicate using language-- oh, honey, it's just SO EXCITING!


You took your time learning to crawl, but once you had that out of the way, you didn't waste a moment in figuring out how to maneuver yourself around the furniture. You could spend hours going in circles around and around the coffee table. Just the other day, you let go and took a single brave step from one piece of furniture to the next. Now let me tell you, I'm definitely NOT one of those moms who wants her baby to stay a baby forever. I didn't cry when you grew out of newborn diapers, and the first time I saw you sitting up all by yourself, I felt nothing but excitement. Up to this point I have enjoyed each phase of your life and I've looked forward to all of your accomplishments with a smile, but watching you take that step brought tears to my eyes. Each day I see a change in you. You are becoming your own, independent person and as much as it thrills me--makes my heart sing, even--it also makes me realize that you are growing so fast! And although I want you to always do things at your own pace, in your own time, a little part of me can't help but think not so fast, baby girl. Slow down. Stay exactly the way you are for just one more day. Please.


Love,
Mama

Monday, July 12, 2010

Not Me Monday

Mckmama- Not Me Monday

Let me start by saying that it was not me who woke up early this morning to the sound of a baby vomiting. It was not my eleven month old who covered herself, her mama and the entire bed in puke. And it certainly wasn't me who, in a drowsy haze, halfheartedly wiped up the mess, threw another sheet over the top of it and went back to sleep.

On that note, it also wasn't me who found a perfect chocolate chip wedged in Morgan's belly button as I was changing her diaper. And I can assure you it was not me who ate that chocolate chip to avoid having to get up, walk across the room, and throw it away.

I've heard that motherhood has a way of taking logic and turning it right on it's head... fortunately, that hasn't happened to me.

Wednesday, July 7, 2010

There goes the neighborhood...

Next door to me, there are twin girls who are known throughout the neighborhood as "Double Trouble". Last year, three weeks after Morgan was born, the twins got a baby sister. You guys, the words "Double Trouble" have taken on a whole new meaning:



Oh, and just in case you were wondering, that was my hillbilly baby playing on the front porch naked last night. When did we become the Clampett's? And even more puzzling, when did I become okay with that?

Friday, July 2, 2010

For Conner

Dear Today Show,

By now, I'm sure you've heard the heartbreaking story of the Jones family who recently lost their son, Conner, to Cystic Fibrosis. (notsobrightandshiny.blogspot.com)

Several days after the passing of little Conner Jones, I'm still struggling to pick up the pieces of my broken heart. I never knew Conner. I've never met his mom, Sarah. In fact, I can almost certainly tell you that I'll NEVER meet her. But I can also tell you that I love her. I'll say it again: I truly love Sarah and Conner Jones.

And I love the single mother who has dedicated every day of her life to making sure her daughter with CF is as happy and healthy as possible. I love the newlyweds who have made it their mission to spread awareness about this disease. I love the 28 year old who just recieved new, mucus free lungs. I love the mother who teaches her CF sons how to be healthy and love Jesus. I love the little CF boy who plays baseball better than I could ever hope to. I love all the parents who are a voice, an advocate, for their children. I love all the moms and dads who somehow balance the consuming task of maintaining their own health issues and taking care of their children's needs. I love the parents trying to come to terms with the diagnosis of their newborn. I love the woman struggling with infertility due to CF.

I love all these people and I'VE NEVER MET A SINGLE ONE OF THEM.

You see, my two older sisters and I were born with CF as well, and because people with CF are encouraged not to mingle with each other due to the risk of spreading potentially fatal bacteria back and forth, the only way I will ever know these wonderful people is through the internet; through blogs and forums and social networking sites like Facebook.

But these people are more than online friends, they have become my family. Through the internet, we share stories and pictures; we swap advice and health tips; we laugh and cry together; we hold (virtual) hands through trials and we celebrate triumphs; we pray with and for one another; we love each other and sometimes...tragically, we lose each other. So it is with Conner Jones.

Conner was seven... SEVEN! That is the horror and the truth of this disease. It is slowly, painfully and relentlessly stealing the lives of people--children--every single day!

I was there, reading about and praying for this sweet boy, along with literally thousands of other people across the globe. Because his courageous mother was willing to share all the bitter, difficult, painful details, Conner was able to touch the lives of countless people. I, for one, will forever be influenced by him.

There are several schools of thought among the CF community, and we all stand on a different rung on the positivity ladder, ranging from Sarah's "Not So Bright And Shiny" to another CF'ers "I Have CF, So What?". I suppose I fall somewhere in between. I honestly don't know that a cure will be found in my lifetime, but I do believe it's a cause worth fighting for. Not just for myself, but for all the children fighting this disease, dealing with the physical and emotional pain this illness invariably causes; for the children, like my own daughter and my niece, who will spend a significant portion of their lives without a mother at home because "mommy's in the hospital again"; for the husbands and wives of CF'ers everywhere; for their mothers and fathers, grandparents, aunts and uncles, and their brothers and sisters; for my own mother who cradled her daughter in her arms as she took her very last breath at the age of 14; and for mothers like Sarah who struggle to find an answer as their dying child asks, through anguished tears, "Why?".

We aren't asking for pity, we are asking--PLEADING--for help! Because as grateful as we are for this online community, it's a crying shame that any of us have to be a part of it in the first place. Red was Conner's favorite color and in the days since his death, the CF world has been painted red in a display of support for the Jones family.

As I sit here typing this in my red T-shirt, I ask you to join our cause. By spreading CF awareness and showing support for sweet little Conner, you will be helping each and every person out there whose life has ever been affected by this terrible disease.

Let's come together and give all the Conner Jones' out there a fighting chance!

From one CF crusader,
Jenny Livingston

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Anyone who has been touched by Conner's story is being encouraged to write a letter to the Today Show, if you feel so inclined.

Thursday, July 1, 2010

Ordinary days


"Normal day, let me be aware of the treasure you are.
Let me learn from you, love you, bless you before you depart.
Let me not pass you by in quest of some rare and perfect tomorrow.
Let me hold you while I may, for it may not always be so.
One day I shall dig my nails into the earth,or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return."
-Mary Jean Irion

Last weekend was an ordinary weekend, filled with perfectly ordinary activities. An ordinary bath in our ordinary bathroom:



An ordinary swim in an ordinary pool: 




Followed by an ordinary lunch:



And some ordinary child's play in our ordinary living room:



(We were watching Beauty and the Beast/getting ready to put Morgan down for a nap, which explains 1) the darkness and 2) why Shylee's eyes are glued to the TV.)

 There are few things in this life that I treasure more than these ordinary days with my anything-but-ordinary girls.