Friday, July 8, 2011


This is the story of Kaleb Anthony. My handsome, loving 10 year old son. Kaleb is a green belt in Judo, plays paintball, is in drama and chorus at school, involved in his Community Center basketball league, an honor student, as well as a great volunteer for many organizations. He was one of the top nominees for Military Child of the Year 2011, as well as an intricate part in organizing a toiletry drive at his grandma's church to send care packages to soldiers. Kaleb sold several tickets during his summer breaks for Boatsie's organization that supports the troops. He is an old soul. Wise beyond his years. His father is currently serving in Afghanistan. This is his third deployment in the last five years. I would not get through these times without him. He is an awesome big brother to his two siblings, a tremendous help around the house, and even on the darkest days he knows how to make me laugh. Kaleb never complains, he never asks to be put first.

Everyone that meets Kaleb tells me how well mannered and sweet he he is a joy to be around. Most people would never know that he isn't supposed to be here. When I was 6 1/2 months pregnant, I went in for my first ultrasound. My pregnancy seemed normal, so because we lived in a small rural town the doctor did not see it necessary to perform one before that time. We were beyond excited to meet our little person. I remember her showing us his face, and then asking next if we wanted to know the sex. When my husband heard that we were having a boy, he let out a yelp...and just beamed from ear to ear. As the ultrasound proceeded however, the look on the tech's face went from joy to terror. I remember the moment she knew something was wrong...and told us she needed to get the doctor. Nothing was said, but I just knew. As the doctor came in and looked at the screen, he then proceeded to tell me that my son had what they called a "double bubble". He had several blockages in his intestines, and they could see several abnormalities in his heart. They said that it looked like Kaleb has just stopped developing. The doctor also mentioned that Kaleb having this many anomalies would probably have some sort of mental retardation as well. We then were told that our best bet would be to just end the pregnancy that day because even if I did deliver Kaleb, he would be still born. Devastated and completely numb, we left the office. As we drove home I made it very clear to my husband that I would not terminate the pregnancy. We would just wait, wait to feel our babies kicks stop. So many questions went through my mind. What had I done wrong? Did I eat the wrong things, was it because I was only 18? Why was OUR baby sick? As the weeks went on my husband decided that we needed to be home for the holidays and surround ourselves with family. Despite having heavy bleeding only days before, the doctor cleared me to go, knowing that their was nothing he could do to help. As we reached my mother in laws house after an 8 hour drive, I became very swollen, very quickly. Then, I noticed that I had excruciating gas pains. However, this was not gas....I was in labor. By the time we got to the hospital, I was five cm dilated and their was no stopping the labor. Within 4 hours, on December 28,2000, I gave birth to my beautiful 3 lb 5.6 oz miracle. He came out crying, and despite only being given two hours to live, the moment I heard that cry, I knew he was a fighter. After the two hours passed, a decision was then made to life flight Kaleb to Kosair Children's hospital in KY to better manage his last hours. We were living in Kentucky at the time so they thought it would be easier for us to be near him there rather than stay in West Virginia. After the next couple of hours passed, I was given a call that they wanted to perform colostomy surgery on Kaleb. They were only giving him a couple of weeks to live, but wanted to manage his care as well as they could in that time. After the double barrel colostomy was performed, Kaleb had a rough touch and go month. He had a colostomy revision at three weeks old. Surprisingly however, at 1 1/2 months old he went home. I was scared to death. The next couple of months were so hard. We had to learn colostomy care as well as how to deal with a "blue" baby. Kaleb was diagnosed with duodenal and anal atresia with an imperforate anus secondary to an annular pancreas, as well as tetralogy of fallot on top of many other problems. At eight months old Kaleb had several days where he turned blue with no relief. After a heart cath they said they weren't aware that his heart was as bad as it was. He had his first open heart surgery within 24 hours. Followed by another one at age two. Kaleb endured several more procedures over the years for his other problems. In the end of 2007 I noticed that my energetic little boy was getting winded and sleeping constantly. He also was suffering from migraines. After several trips to the hospital, and testing, and begging and pleading they finally agreed that a heart cath should be done. On June 17, 2008 and I kissed Kaleb good bye as they wheeled him down the hall for his third heart cath. Not really overly worried bc he had endured so many other major surgeries and two prior heart caths. Within an hour I was called to come to intensive care. Kaleb was not tolerating the intubation and the cath was called off. They needed me to help wake him up. Amongst the chaos that was taking place in the ICU and not realizing I was Kaleb's mother, they buzzed me back. I walked in to see them resuscitating my beautiful little boy. As an EMT, I had performed CPR and used a crash cart several times. Never would I wish anyone to see their child having this done. I watched my baby die that day. He had gone into respiratory arrest. They revived him however we were told that Kaleb was very sick and probably wouldn't make it. We later found out that he had had a pulmonary hemorrhage. The anesthesiologist had hit something by mistake and Kaleb had drown on his own blood. After two weeks on a vent, he finally was able to be extubated. We took him home shortly after on oxygen. For obvious reasons, we refused to take him back to that hospital and were hooked up with Dr. Pearl in Phoenix, AZ. After a heart cath in October 2008, Kaleb had his third open heart surgery in February 2009. He had a pulmonary valve replacement followed by an emergency fourth open heart surgery 72 hours later. His heart was not tolerating the new valve and he was also bleeding out. He has since endured a colostomy closure and his second anal plasty as well as smaller procedures for things like testicular torsion. We are currently working on bowel management since he has yet to have much control. Kaleb's left ventricle and atrium are extremely enlarged and his heart is very tired. His cardiologist is hoping to wait a couple more years to place a pace maker, however, living in Colorado's famous altitude has presented some problems for him. We've made several trips to the ER bc his pulse and bp were extremely low. We have also been told that Kaleb may need a heart replacement in adulthood. Despite 14 surgeries and always having the odds stacked against him, he's here, and he's mine. Words cannot express how proud I am of him. My days can be hard. My husband is my best friend and is often gone while I'm left to deal with things like surgeries and disappointing doctor's appointments, however we get through it. Kaleb LOVES life. He lives everyday like it's his last. Unfortunately no one can tell me how old Kaleb will live to be. It doesn't matter though. I cherish him now. I cherish all his accomplishments and all the lives he has touched. He was put on this earth to help others...and whether it's through his volunteer work or helping others by telling his story, he's going to change the world someday. He may be small for his age, but he has such a huge heart. He's a fighter!



A week ago today I was in Venice Beach, CA walking the boardwalk with my sister and best buddy Brant. Today I awoke in Nebraska. What a world we live. Cassidy, always explore, nobody I know ever wished they worked more, but everyone says they wish they traveled more.

I had no desire to get out of bed today. None, zip, zero, nada, zilch... But you know what happened? I got out of bed and WOW, that's all I can say about today. We certainly managed to put some miles in for your one year anniversary, admittedly there was about 24 miles that where added do to me not paying attention and going the wrong way. Ugh. It was a long day, so let's try to remember what happened. We left our motel and had 4 eggs for breakfast and took off down the road. It was a cool morning and we where making good time, it was when we arrives in Oxford, NE where it went wrong, instead of paying attention we went 24 miles Southeast, not straight south as we should have gone. So after 1.5 hours of extra pedaling we once again found ourselves fighting a head wind. With 55 miles under our belts we took off down the road to tackle the last 60 miles to our final destination.

Cassidy, I think this was the toughest headwind we've come across this whole trip...and remember those hills, Jimney Crickets, they seemed to never end. You kept me motivated Cassidy, it was your one year anniversary and together we had no choice but to overcome these little hurdles, and you know what Cassidy? We did it!

9 hours later we rolled into the little town of Oberlin, KS where history tells us is where the last indian raid in Kansas occurred in 1878. But I digress. Thanks for riding with me today Cassidy, wouldn't have made it without you.

Today made me think of this poem, it's a long one and all for all my riding partners:

Oh! The Places You’ll Go!
by the incomparable Dr. Seuss

Today is your day.
You’re off to Great Places!
You’re off and away!

You have brains in your head.
You have feet in your shoes.
You can steer yourself any direction you choose.
You’re on your own. And you know what you know. And YOU are the guy who’ll decide where to go.

You’ll look up and down streets. Look’em over with care. About some you will say, “I don’t choose to go there.” With your head full of brains and your shoes full of feet, you’re too smart to go down a not-so-good street.

And you may not find any you’ll want to go down. In that case, of course, you’ll head straight out of town. It’s opener there in the wide open air.

Out there things can happen and frequently do to people as brainy and footsy as you.

And when things start to happen, don’t worry. Don’t stew. Just go right along. You’ll start happening too.

Oh! The Places You’ll Go!

You’ll be on your way up!
You’ll be seeing great sights!
You’ll join the high fliers who soar to high heights.

You won’t lag behind, because you’ll have the speed. You’ll pass the whole gang and you’ll soon take the lead. Wherever you fly, you’ll be best of the best. Wherever you go, you will top all the rest.

Except when you don’t.
Because, sometimes, you won’t.

I’m sorry to say so but, sadly, it’s true that Bang-ups and Hang-ups can happen to you.

You can get all hung up in a prickle-ly perch. And your gang will fly on. You’ll be left in a Lurch.

You’ll come down from the Lurch with an unpleasant bump. And the chances are, then, that you’ll be in a Slump.

And when you’re in a Slump, you’re not in for much fun. Un-slumping yourself is not easily done.

You will come to a place where the streets are not marked. Some windows are lighted. But mostly they’re darked. A place you could sprain both your elbow and chin! Do you dare to stay out? Do you dare to go in? How much can you lose? How much can you win?

And if you go in, should you turn left or right…or right-and-three-quarters? Or, maybe, not quite? Or go around back and sneak in from behind? Simple it’s not, I’m afraid you will find, for a mind-maker-upper to make up his mind.

You can get so confused that you’ll start in to race down long wiggled roads at a break-necking pace and grind on for miles across weirdish wild space, headed, I fear, toward a most useless place.

The Waiting Place…for people just waiting.

Waiting for a train to go or a bus to come, or a plane to go or the mail to come, or the rain to go or the phone to ring, or the snow to snow or waiting around for a Yes or No or waiting for their hair to grow. Everyone is just waiting.

Waiting for the fish to bite or waiting for wind to fly a kite or waiting around for Friday night or waiting, perhaps, for their Uncle Jake or a pot to boil, or a Better Break or a string of pearls, or a pair of pants or a wig with curls, or Another Chance. Everyone is just waiting.

No! That’s not for you!
Somehow you’ll escape all that waiting and staying. You’ll find the bright places where Boom Bands are playing. With banner flip-flapping, once more you’ll ride high! Ready for anything under the sky. Ready because you’re that kind of a guy!

Oh, the places you’ll go! There is fun to be done! There are points to be scored. There are games to be won. And the magical things you can do with that ball will make you the winning-est winner of all. Fame! You’ll be famous as famous can be, with the whole wide world watching you win on TV.

Except when they don’t. Because, sometimes, they won’t.

I’m afraid that some times you’ll play lonely games too. Games you can’t win ‘cause you’ll play against you.

All Alone!
Whether you like it or not, Alone will be something you’ll be quite a lot.

And when you’re alone, there’s a very good chance you’ll meet things that scare you right out of your pants. There are some, down the road between hither and yon, that can scare you so much you won’t want to go on.

But on you will go though the weather be foul. On you will go though your enemies prowl. On you will go though the Hakken-Kraks howl. Onward up many a frightening creek, though your arms may get sore and your sneakers may leak. On and on you will hike. And I know you’ll hike far and face up to your problems whatever they are.

You’ll get mixed up, of course, as you already know. You’ll get mixed up with many strange birds as you go. So be sure when you step. Step with care and great tact and remember that Life’s a Great Balancing Act. Just never forget to be dexterous and deft. And never mix up your right foot with your left.

And will you succeed?
Yes! You will, indeed!
(98 and ¾ percent guaranteed.)

Kid, you’ll move mountains!
So…be your name Buxbaum or Bixby or Bray or Mordecai Ale Van Allen O’Shea, you’re off to Great Places!
Today is your day!
Your mountain is waiting.
So…get on your way!


Good morning my friend. Another fine morning today of riding. We decided to see if steak and eggs is what gave us the energy we had yesterday and we might have found our fuel source. We took our time rolling out, watched a bit if the Tour de France to get motivated. If only we could ride half as fast as those guys.

Well it was a fast day, cloudy, very little wind which was a blessing. Our goal is Holdrege, NE, only 72 miles today. By 1130am we where already in Kearney where we stopped for some lunch. Our gps decided to stop working here and we had to go old school.... That's right, we had to ask for directions. I know, the thought of it.

We turned south out of Kearney and soon crossed over the Platte River. This shallow stretch of water is what Lewis and Clark navigated up on their way to the West coast. Pretty amazing to think a few hundred years ago this was pretty much uncharted territory and just moments ago I was complaining my GPS doesn't work.

Well Tristyn, it was a short day we sprinted into Holdrege around 130 pm. To our surprise we almost didn't have a place to stay, who knew the two hotels in this town would be sold out?

We took the afternoon and got some work done, biked around town to find dinner, not much out there but we heard some live music and spent some time at the city park listening to live music, which was so relaxing.

Tristyn, thanks for riding today, it was short, but a good day.

Thursday, July 7, 2011

Cassidy's Caring Bridge link:

Today is Cassidy's one year anniversary of her surgery - a perfect day for a bike ride!

Cassidy had open heart surgery on July 8th to correct her Truncus Arteriosus, and spent 48 hours recovering in the CICU at Children's Hospital. She transferred to the CPCU and spent an additional 5 days recovering. We came home July 15th and will continue to help her recuperate, grow, and develop at HOME!

Cassidy Joy had a bit of a traumatic entry into this world via a somewhat emergency c-section. We knew her lungs would be immature due to a low score on her amnio 4 days earlier, and we were prepared mentally to have a baby that might have to stay in the NICU for a few days. How little did we know just how long our NICU stay was going to be! Day 4 of Cassidy's life, she was diagnosed with Truncus Arteriosus, a very rare congenital heart defect. We were just coming to terms with this diagnosis, and the steps that we would have to take to get her to a place where her body would be ready for open heart surgery, when on day 7 of life, she developed necrotizing enterocolitis. We were quickly transferred to The Children's Hospital, where she had to remain off feeds for 10 days, but managed to avoid corrective surgery for the NEC. On March 8th, we were discharged from Children's Hospital to go home and get Cassidy growing before she returns to Children's for open heart surgery. While we were home, we try to make the most of our time together as a family! We were still seeing doctors and specialists on a weekly (and sometimes more!) basis, and we worried a bit more about every little thing than the average parent of a newborn. But we treasured those months of time together, knowing that soon enough we would be back to living in a hospital room, praying for the health of our fragile baby! On July 8th, 2010, Cassidy recieved a Contegra valve replacement conduit to help her heart function normally. She still has a small VSD and ASD/PFO that we are hoping will repair themselves as her heart heals. She is experiencing some pulmonary hypertension as a result of her repair, which we thought should correct itself in the next couple of months, but is still an issue a year later. She is also still on continuous oxygen to help with some lung damage from surgeries, aspiration, and just some lung anomalies. While she will never be completely out of the woods, she is well on the road towards living a "normal" life, and for that we are so very grateful!

She has come a long, long way in the year since her operation! She is walking, signing many words, playing, loving on all of us and her kitty, and is just an absolute joy to be around. We cannot imagine life without this precious gift. She is still extremely tiny, just a little over 17 pounds at 17 months! But she doesn't let her size slow her down. She recently had g-tube surgery as well to hopefully help her gain a little weight in preparation for her valve replacement which will probably be in the next 9-10 months. We just keep pressing on through the challenges, and try our best to give her the best opportunities. She loves playing outside, going for walks, seeing the dogs in the neighborhood (no, she can't have a puppy even though she would love one, lol), going to the zoo, swimming, everything that an average child would enjoy. And even though we have to take a bit more along in the way of supplies, it doesn't stop us from getting out and exploring all that life has to offer her! I would just like to encourage everyone to hug your kiddos extra tight, and be thankful for each and every moment you are afforded with them!

Wednesday, July 6, 2011

Thursday for Tristyn

My son's name is Tristyn Refior. He is 17 months old and he has 4 different heart defects. He had his first operation at 7 weeks old and his last one as of two weeks ago. He has a coarctation of the aorta, a bicuspid valve, a membrane, and Mitral valve deformity. We were one of the lucky ones who were able to catch his condition at such a young age. If Tristyn hadn't caught rsv we may not have him around today. Thank you so much for everything you are doing for our group. I wish there were more people like you around. Here are some pictures of our little miracle to help keep you inspired.

Thanks again for everything.