Kaleb

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 Boxes...an 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 is....how 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!

Cassidy

Cassidy,

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 Congratulations! 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!

Tristyn,

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.

Cassidy's Caring Bridge link:

http://www.caringbridge.org/visit/cassidyjoy/

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!

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.

Colt

Colt,

Well my friend, what a great day, boy did we rock it there for a while. We must remember what we did that gave us such energy. I think it was the steak and eggs breakfast that gave us the energy to hammer. We had 105 miles ahead of today, we left at about 730a.m. with some low cloud cover and no rain and some long rolling hills. Temps where somewhere in the 70's, humidity hovered about 1000% all day. That's right, 1000%. I think I'm tired of hotel breakfasts, whatever happened to eggs? That said, I never say no to biscuits and gravy, but Colt, I need to lose some weight - you understand. We have been hammering down water and Gatorade, as a matter of fact Colt, just between you and I, I really am beginning to not like Gatorade - however we need those electrolytes. Speaking of Gaterade, you know where that name comes from? It was created by the University of Florida for the football team back in 1965 and named after the schools mascot, which of course is the Gators. Anyway, we stopped around 10 a.m. for breakfast and to actually do some work. Still have to work while out here. We took state hwy 81 down to county road 22, which turned straight West. You know what happened here Colt, a crazy tail wind, we rocked out 10 miles in about 20 minutes, we must have been kicking out 22 mph, it was glorious, but short lived. Such is life, the wind changed direction and we fought a head wind the last 59 miles of the day.

We are now biking along the Platte River, where the Pony Express came threw long ago, as did the Mormon's and of course Lewis and Clark. There is lots of history here Colt, lot's of American History. But one thing you might want to check out someday, every spring in Grand Island Nebraska, over 500,000 Sandhill Cranes migrate here. 500,000, crazy, I know.

Well Colt, I was glad to ride with you today, we rocked it brother.

Kimble

Hey Kimble,

I didn't have an opportunity to talk about our trip the other day, we found ourselves sort of off the grid and let me just say Monday was a hard day, boy howdy was it a dozy. We put behind us another 108 miles and crossed into Iowa. We braved heat, 17 mph head winds with some more wind and some heat added in for good measure. Our goal was a town called Lemars, Iowa - which is apparently the Ice Cream Capital of the World. I guess we should have had some ice cream, however instead we made an ice bath and fell asleep in it, drank lots of water and enjoyed a nice dinner. Much aloe was applied that evening and we dropped a cool $10 bucks on some SPF 50 sunscreen as sun block was sold out. Not too exciting ending to the day my friend, but it was a really hard one to say the least.

The next morning was a blessing, no sun, just a drizzle all day with more of that pesky head wind. Our first flat tyre happened along a lonely stretch of back road. Not to worry, I'm an expert at the art of fixing flats, we have 9 more tubes which I hope get us the balance of the trip. We actually tore the tyre, but we used an ancient old secret I learned, you fold up a $1 bill and put it over the tear (on the inside of the tyre), this will prevent the tube from popping threw the rip in the tyre. So far so good, just have to remember there is a $1 in my tyre. Within 30 miles we where crossing a bridge and entering Nebraska, the land of bug-eaters, Corn huskers and tree planters...as they have been called in the past. You would think Nebraska is flat, so did I. Well Kimble, little side note, route 35 from Sioux City, IA to Norfolk, NE has a LOT of hills, long, rip your legs off hills that make you want to cry; however we are tough and we didn't cry, we just kept on peddling and turned the music up louder. 107 miles later, with one wrong turn which we don't need to speak of, we made it to Norfolk, NE, the tenth largest city in Nebraska, where buffets are plenty and yet another town AT&T is unaware of. We settled into our room, applied yet more aloe, soaked in the tub, showered off, brushed our teeth (we must always brush) and where soon sleeping for the night.

It was fun riding with you Kimble, you pushed me pretty hard those past couple of days, but we did it. Thanks.

Colt's Story

Colt was born in September 2010. Quickly after Colt was born they realized something wasn't right... Hours later they diagnosed Colt with Complex Hypoplastic Right Heart Syndrome. He was sent to Children's Hospital Denver where on day 5 he had open heart and a shunt was placed to allow him to grow for awhile. The original thought from Doctor's was that Colt would need a fontane procedure. After months of growth Colt had the chance to grow things on his own and he did to an extent. Doctors told his parents that by 9 months of age his shunt would most likely be too small and the Glenn Procedure would be needed. The fontane had been ruled out as Colt was able to use his right ventricle a little more.

Colt's parents were very happy with the treatment his Doctors from the area had been giving him, but wanted to look further. They had their Cardiologist send out several letters to other hospitals... In the end Children's Hospital Boston replied and said they had seen a similar case and wanted to take a look. Colt traveled to Boston, and on June 20th he went in for testing and on June 21st he had open heart surgery. The surgeon did an invasive set of fixes to the right side of his heart with a bi-ventricular repair. During surgery they repaired several "holes", the tricuspid valve, pulmonary artery, and removal of the shunt. He did very well through his recovery and sent him home to Colorado on June 30th! He is now being watched closely by his Doctors to make sure that the right side has the proper functions and is able to push blood through both ventricles on it's own. He will still need several adjustments, but spirits are high he will be able to use his whole heart to pump blood! Colt is a blessing to have around us and we love him more than anything!

During a followup ultrasound, three months before my fifth baby was due, it was confirmed that he had some serious heart defects, later diagnosed as Pulmonary Valve Atresia, Right Ventricle Hypoplasia, and Tricuspid Valve Hypoplasia/Astresia, which basically meant that my baby’s whole right side of the heart could not function as it should. What stuck with me, was that my baby would not survive after birth without immediate intervention, as well as multiple surgeries, but that they were already coming up with a plan on how to help his heart function the best possible way.

When I was 38 weeks pregnant, I was induced, and I delivered Kimble safely and without any difficulties. He was immediately taken to the NICU where they started him on Prostaglandin, which kept the PDA open and allowed for enough blood to reach his lungs to be oxygenated. After a day or two, Kimble was transferred to The Children’s Hospital, right across the street from where I delivered him, and there, he spent the next five weeks undergoing many procedures.

Kimble's three defects made his diagnosis rather unique. We were never given any long-term plans. With Kimble, we've had to develop a "watch and see" type of perspective, as we waded through the different options and surgeries that would give Kimble the best possible life.

During those first five weeks of life, Kimble had his pulmonary valve “ballooned” through, multiple Cath Lab procedures, an open heart surgery to place a BT Shunt, as well as undergoing emergency surgery just three hours after they placed the Shunt, and a very, very rocky recovery following his surgeries. He also had swelling around his heart that had to be drained about a week after his surgery, as well as an infection that needed to be treated. All in all, Kimble had a terribly rough start to life.

Finally, he was released from the hospital, where we got to bring him home to meet his four other siblings. For the next six months, Kimble was stable but was observed closely by his cardiac team. His oxygen saturation was about 78 percent, which was normal for him. At six months of age, Kimble had his cleft lip repaired surgically, and he also underwent some procedures to get him ready for his next heart surgery.

At seven months, Kimble had The Glenn Surgery, which rerouted half his body's bloodflow to bypass his right heart, and go directly to his lungs to get oxygenated. This surgery made all the difference, in Kimble's heart function. He recovered so quickly, and since then, has made leaps and bounds with his developmental abilities.

Kimble just turned 20 months old. He is walking and climbing and spinning and jumping. His level of energy is surprising and welcoming. For any casual observer, Kimble's heart defects aren't apparent. However, he is still in the thick of his diagnosis. He will probably require another surgery next year, but for now we are closely monitoring his heart's growth and adaptability, while rejoicing at how well he is doing.

Mason

Mason,

We had a good day today. Started a couple hours later then we wanted, but with 2 bowls of oatmeal in our belly and with the temps being nice and cool in the morning and along the minnesota river down to Mankato. We arrived in mankato for lunch just as planned. We had our share of protein with all the bugs we swallowed along the way but we washed them down with some Gatorade and kept on rolling heading east on route 60. Our goal was Windom, MN and 104 miles later we pulled in at 4:30 pm, just in time to have some dinner, drink lots of water and rest up for tomorrow.

Thanks Mason for joining me today.

Riding for Mason

-Mason John - May 4, 2010

Mason was born May 4, 2010 and we were completely unaware that anything was wrong. Although he was in heart failure, we would not find out until one hour before his and mine discharge. His pediatrician heard a heart murmur and ordered an Echo. Within a half hour of the Echo, Mason was in the NICU, intubated, being kept alive with medicine and numerous tubes. He was diagnosed with Coarctation of Aorta and had open heart surgery on the third day of his life. We had no warning and did not understand what was happening to him. The memory that stands out the most is that he was taken from me and we could longer hear him cry. With two healthy boys at home waiting for their brother, it was hard for us to tell them what was going on, when we did not know about Mason’s diagnoses of Congenital Heart Disease. Mason came through surgery with flying colors, I got to hold him again when he was five days old. To hear him cry was the sweetest sound. At four months old he was diagnosed with Shone’s Syndrome. He is monitored for the Coarctation repair, Bicuspid Aortic Valve, and Mitral Valve Stenosis. Mason is just getting his walking down and enjoys being able to chase after his big brothers!

Aidan

Aidan

Aidan, we've had a busy day today for our first leg of the trip. We spent yesterday with my sister in Venice Beach, CA and drove late last night back to San Diego. With four hours of sleep, jumped on a plane this morning at 6 a.m. and arrived in Minneapolis around noon. Whew. Just finished packing and now it's time to get on the bike. I hope they have ice cream where we are going. Well the water bottles are filled, after much frustration I finally found my road bike shoes that where tucked away in a cubby in the garage. I guess I thought that was a smart move, clearly it was not. I've changed into my cycling kit which I will be wearing every day for the next 9-10 days. I know, gross.

Well, it's a beatiful day today Aidan, 84 degrees and lots of sun and very little wind. Our goal today is Belle Plaine, MN. Just 40 miles away, but with the 3pm start that's a good start. It took us 2 hours and 45 minutes. I'm ready to jump in a pool.

Thanks for being my motivation today Aidan.

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Aidan Kekoa was born on March 6, 2009 at 4lbs 2oz with Tetralogy of Fallot and severe pulmonary stenosis. Tetralogy of Fallot is a complicated heart defect that has four charecteristics. Aidan was the worst of the two types of ToF babies, he was a blue tet and only oxygenated around 70% on his own. He underwent his first heart surgery when he was 21 days old and did not come home until he was 2 ½ months old. This was just a temporary repair. We then went back to The Children’s Hospital for his 2nd heart surgery/full repair when he was 5 ½ months old. It was a 9 hour surgery that gave him the opportunity to have a life just like everyone else. After 2 ½ weeks of recover Aidan came home with a new lease on life and energy that we never thought possible!

Aidan is now 4 years old. He has undergone multiple cardiac catheterizations since his full repair because he still suffers from his sever pulmonary stenosis. This June we had Cardiac Cath #7. The doctors at the Children’s Hospital went in and placed a second Pulmonary stent and this has given him so much energy and allowed him to play without being so tired after 10 steps! He now can keep up with his friends on the playground most days.

Although he has his good and bad days we have had more good than bad lately thanks to the amazing doctors that care for him. After everything, the Cath labs and surgeries, Aidan always smiles and his strength & bravery shines brightly! He is such an inspiration and amazes me every day! I am so grateful to the surgeons, doctors, and nurses at The Children’s Hospital that cared for him daily and gave him such an amazing opportunity at life. I am so blessed to have a little boy like Aidan, he is a miracle baby, and I thank the Lord for him every day!