Saturday, August 28, 2010

Breathe easy Kerry, my cyster...

It amazes me how much you can care for someone even when you have never officially met. When you have a thing as major as CF in common, it creates an instant bond between you. Such is the case with my cyster friend, Kerry.

I found Kerry's blog back in May and have been following her story and commenting occasionally ever since. Living in a hospital and on a vent for so long made her a CF hero in my eyes. She had a spunky attitude which I'm sure would have attracted me to her as a friend in "real life" had we had the chance.

She fought for more time to be with her husband and two young sons. She used her experience to bring awareness to the huge need for people to become organ and tissue donors--and did she ever make a difference! Many lives will be saved because of her willingness to tell her story. Here is a link to an article about her written in a local newspaper.

Many people don't know that in most states just signing up to be a donor when you renew your license isn't enough. You must sign up with the donor registry in your state. The process is easy and confidential. If you don't know how, google "organ donation in (your state)" and you can find the information you need. Here is a link to become listed in Colorado:

I became an organ donor and you can too!

On Wednesday, after almost 3 years on the list with the last 5 months hospitalized, Kerry Hutchin's body could no longer fight as hard as her spirit and she was removed from the waiting list--doctors felt she was now too weak to survive a transplant. In a follow-up article, George Roby, her father related:
"I told her I'm sorry there won't be a transplant," Roby says of his daughter. "And she said, 'Oh, there'll be a transplant.'" Roby has to pause. "But she means the other way -- she'll be giving her organs." Hutchins is a registered organ donor. "She's an angel," her dad says.

This morning Kerry passed away. Here is a link to the updated story.

I'm so sorry Kerry didn't get her miracle but she will be the reason many more people will get theirs. My prayers go out to her husband, sons, and extended family--may they be blessed with the peace that surpasses all understanding.

Thursday, August 26, 2010

And here we have Idaho...

Growing up in Burley, Idaho, county fair time was always my favorite time of year. We spent the summer working on 4-H projects and then entered them into the fair. This year our Cassia County Fair and Rodeo celebrated its 100th anniversary so it was only fitting that one of its biggest fans--ME--could be there to commemorate the occasion. So last week we loaded up the car and headed off on our 12 hour drive to Idaho.

My sisters and most of their kiddos came to Mom and Dad's to join in the festivities. They actually got there two days ahead of us so the kids could enter some cooking and crafts into the open class judging (They got ribbons and money for their efforts and it was fun finding out how well they had done.) We were jam-packed into the house and got lots of family togetherness.

The fair's official opening is kicked off with a parade. Our parade is full of horses, drill teams, floats, old cars and buggies, tractors, candy-throwers, rodeo royalty and long pauses. Seeing the Burley Bobcat Marching Band brought back lots of memories of my high school days. We got great curb-side seats in the shade.

My 87-year-old Grandma with Joshua, my son.All of us at the parade--minus 3 husbands and 5 kids who either: had to work, had mandatory band practice, hadn't arrived yet, or are off serving missions! Missed you.

One afternoon while the "Older Girls" went to a fantastic quilt shop--yes, I wanted to buy everything in sight it was such a sweet store--Jeff and the younger kids went swimming at the new Rupert Pool. Jeff and Jessica found Dad's business on the sponsor wall.
Good times in the pool!

No fair is complete unless you go to a rodeo! It was Christina's first rodeo experience--she thought the cowboys were hot! The best part of the night was the antics of the first bull in the bull riding competition. After bucking off his rider, the crazy thing refused to leave the arena and would jump straight up in the air and flop down on his back. We were all laughing so hard and even the rodeo announcer was cracking up and said he'd never seen anything like it before.
Christina hanging out at the rodeo with her Aunt Ralene, Jessica, and Uncle Jeff.Me and my Noah!Rheid made it in time for the rodeo.

But my favorite part of the trip turned out to be not part of the fair at all. My mom, my sisters, and I went to the Twin Falls Temple to do some family names. We just missed going through a session so we did an initiatory group before the rest of the family came to do baptisms. The temple was so beautiful! As a family we were able to do almost 50 family names and several hundred temple names. It was an amazing afternoon and no words can adequately express how I felt being there with my family. I am grateful to know that our family can be together forever!Outside the doors of the Twin Falls LDS Temple. My mom and twin sister, Terri, in the backseat on our way to Twin Falls.My older sister, Ralene, driving and me soaking up all the air conditioning in the front seat.

And of course, no good day can't be made better with great food--and lots of it. We went to Gerties Brick Oven Cookery and stuffed ourselves senseless with all-you-can-eat pizza. The dessert pizzas were especially delicious. My amazing parents at the pizzeria.Christina feeds the cousin.
Of course not all the good food was to be found in Twin Falls, Jessica whipped up a batch of delicious pineapple upside-down cupcakes.Jessica's cupcakes were almost too pretty to eat--but I managed to consume three of them. They were worth the extra insulin!

After five fun days in Idaho it was time to head home. We stopped over at Rheid's parents in Utah on Saturday night so we could celebrate his dad's 79th birthday on Sunday. His mom's um...29th birthday was the next day so we got to celebrate that too! Most of his family was able to come up to Heber City for a Sunday brunch before we had to leave. It was so good to see everyone again. I should have taken more pictures there but luckily I did remember to take one of the birthday boy.WHAT A GREAT TRIP!

Saturday, August 14, 2010

Venting just a bit...

So I just finished with my IV stint, right. Should be feeling on top of the world, right? Wrong. Not getting the rebound I wanted or expected.

With about three days left to go on the meds, I started to feel a bit more wheezy. I chalked it up to all the dead bacteria bodies laying around and irritating my airways; the doctors have technically explained the phenomenon to me before when I've had the wheezies start up just as I'm finishing IV's. So I thought everything would kind of calm down once my lungs stopped being the killing fields and became their warm, fuzzy, Bacteria-R-Us selves again. Instead, my airways are overly twitchy and when I can manage to get them to stay moderately open, I sound junky.

I started to convince myself that things weren't really that bad and then today happened. Rheid and I signed up to walk a precinct and hand out fliers for a friend of ours running for a seat in the Colorado State House. (Vote Bob Morain for District 52 Colorado House of Representatives! Woot woot!) I had just finished my breathing treatments before I left and I had my oxygen on so I expected to be able to walk door-to-door. I knew I wouldn't break any land speed records doing it but it shouldn't be too difficult either. Wrong.

I bumped my oxygen up an extra liter because I felt so breathless. It sounded like I had inhaled a squeaky toy cuz when I would breathe out, you could hear a smothered whistle. Not cool. Then add in the coughing fits, argh.
Note to random homeowner: I'm sorry about throwing up on your lawn. If it's any consolation, I think the bacteria may help your lawn grow lush and green--since everything inside of me is lush and green.

Thinking I might up my standard daily dose of steroids for a few days before I send up a flare to the clinic. It just wasn't supposed to work like this. Yes, I'm a bit steamed so maybe a small vent is in order.

Wednesday, August 11, 2010

Never give up...

When I find something that touches my heart, I want to share it with those who share my heart. This Josh Groban song is such a life-affirming one and I count it among my favorites--it is one I listen to when I get discouraged. Derek reminds me that even when things go wrong and things get tough, I can still be victorious as long as I never give up on myself because my Heavenly Father never does--it is He who strengthens me.

Monday, August 9, 2010

Oh what I did in the summertime-part two...

Next stop on the fun train--the Larimer County Fair. We picked up the whole family plus Josh's friend, Jason, and headed to the fairgrounds. Christina got off work in time to meet us there. We walked through the vendors and then saw the exhibits. My favorite part being the beautiful quilts which hung from the rafters. It brought to mind my 4-H days and how much I loved showing off all my hard work--the ribbons and money teaching me that giving my best efforts paid off in the end.

Of course it wouldn't be a proper fair experience if we didn't walk though the stinky animal barns--and these didn't disappoint; the variety of critters and the smell factor teamed up for a perfect sensory assault. Loved it!

Our favorite outdoor attraction had to be the Splash Dogs. The brave dogs who launched themselves off the platform into the water to retrieve their favorite toy were amazing. But the newbies who wholeheartedly ran to the end and then suddenly put on the brakes were hysterical.

The petting zoo was another highlight of our fair adventure. For being in a small space it sure packed in a varied menagerie of tame animals for our petting pleasure: a variety of goats, a pot-bellied pig, llamas, a giant tortoise, a couple ponies, ducks, a giant rabbit, and even a camel. Only the girls were brave enough to enter however. Christina and I paid for a dixie cup of sliced carrots and boy were we popular. Best dollar we ever spent! One overly-friendly pony decided my arm might be just as tasty as a carrot and tried to take a nibble out of my wrist--too funny. Once I decided to sit on the bench and up popped a little goat to keep me company.

Maggie had a blast riding the ponies and taking a spin on the Ladybug Twirl (I sense a theme here.) Personally I think Mike was having way too much fun! It was a great afternoon with the fam.

(Editors Note: Last night about dusk, Rheid and I "walked the wife" around the neighborhood. Two blocks away from home, to our utter delight, we saw seven raccoons venture out of the storm drain, run across the lawn, and vanish into the night. Who needs a fair to see awesome critters??!! It was a tender mercy to be at the right place at the right time to see the cute little family scurry off to have their own adventures.)

Sunday, August 8, 2010

Oh what I did in the summertime-part one...

Wanted to share the fun I had on Saturday. A local nursery celebrates bugs, ladybugs in particular, every late summer. I saw the sign advertising their ladybug launch and I was determined not to miss it this year. Problem was I needed someone to be as excited as me at the prospect of seeing over 20,000 ladybugs released. Enter cute-as-a-bug niece, Maggie, and her willing parents.

Luckily Maggie woke up early from her nap so we squirted over to the nursery with five minutes to spare before lift-off. But some party-pooper in charge let the fun begin 10 minutes early so we missed the initial impact of all the bugs. Turned out to be a blessing in disguise--Maggie freaked out at the residual ladybugs flying around. It probably didn't help that the first evidence she saw was a young girl's arm which was completely swarmed with the little red critters. The nursery distributes cups with hundreds of ladybugs in each one and then everyone opens them up at the same time. (Talked a little girl into letting us take a picture of her nearly empty cup.)

I talked to a couple ladies who were standing around and they said the whole thing is creepy in an amazing type way. Once launched the bugs land everywhere--on your arms, in your hair, on your face, everywhere. One lady said people were even plugging their noses just in case. I know my lips would have been locked tight for sure had we experienced the take-off.

As it was we had them climbing on us just a couple at a time but it felt like you had lots more crawling on you anyway. Kind of the bug heebie-jeebies! Found a stow-a-way in my purse too. The creepiest part of all though was trying not to step on any of them. Unfortunately since there were lots of people, there were ladybug casualties, though not as many as you might think considering the circumstances.

Along with the launching there were bug exhibits, bug crafts, bug tattoos, and a large ladybug inflatable. Lots of fun! (Maybe next year I'll save a pft nose clip and bring it along for nasal protection--oh what a fashion statement that would make!)

Thursday, August 5, 2010

Did you hear it...

Did you hear it? Maybe it was just a low rumbling where you were but here the sound was quite deafening. I heard some crazy lady yelling, "Yippee! I'm finally free!" Oh wait, that was me. Yeah, I get a little excited after I pull that Huber needle from my port. No more shadowy IV poles following me around. No more itchy skin. No more impromptu macrame sessions with my O2 hose, IV tubing and insulin pump line...yes, I've managed to get all my medical accessories tied in some knots any boy scout would be proud of. Now I get my kitchen table back, my shower back, my taste buds back, and my freedom back. Here's to my first drip-free day. Who wouldn't want to shout that from the rooftops!

Sunday, August 1, 2010

This day in history 24 years ago...

It's truly amazing to me how time works. Days can seem long but then weeks and months fly by. And it seems the older I get, the faster time goes. When I look back on the past 24 years, it now seems a blur--some kind of time/space continuum thing. But I do remember precisely what I was doing 24 years ago today.

August 1, 1986 I was in the B unit on the 3rd floor of Utah Valley Regional Medical Center rejoicing in the fact that my little baby boy had been delivered safely the night before, July 31st, at 11:07 p.m. It was hard for me to believe that my 7 month odyssey had come to an end and finally I truly belonged in the postpartum ward.

After 6 months of nausea, weakness and no weight gain, I went into the hospital in pre-term labor. I had never been admitted to a hospital before--and for a cfer, that's saying something! It was a scary time. I stayed there in my cubbyhole of a room for a month on complete bed rest--no bathroom, completely flat, and bored out of my mind. No electronic gizmos back then to pass the time, only about 8 stations on the television which had one button, forward. Slowly, so very slowly, the channels would change and once you made the loop, off the tv went and then you had to wait for it to come back up again after turning it on. It was the bane of my existence, can you tell?

As hard as it seemed at the time, looking back I can see God's hand in it all. Because of his potential prematurity, I was given steroid shots to help his lungs develop faster. (He never needed O2 even being 8 weeks early...that's my boy!) Doing absolutely nothing burned few calories so I finally started gaining weight and so did he. (The morning after delivery when I stood on the scales, I was back to my starting weight.) Josh was born weighing 4 lbs. 6 oz. which surprised the doctors--he did go down to 3 1/2 lbs so we were glad he had some extra weight to spare.

Because he was so early, his body was covered in hair--like peach fuzz. He was so tiny and furry and cute! About an hour after he was born, they wheeled me into the NICU to see him. I started to cough. That little guy got up on his arms, lifted his head and looked around for me. The nurses were freaking out. I'm not sure if he was excited to see me or he was "oh no, I thought I got away from that noise." But I knew in that moment he was a fighter and he would be okay.

That day twenty-four years ago he made my dreams come true--I always dreamed of being a mom. You've come a long ways buddy. I love you.

Notice how big a regular size bottle top/binkie is compared to him. He just swims in his preemie diaper.