Heart Walk

We must say that although many of our walkers were not able to make it to this year's walk, it was still a great family event.

I first wanted to thank all of those who walked with us, raised funds with us, donated with us and supported us. We could not do everything we did without all of you.

Every year I have a deeper appreciation for the cause. My "ah" moment was seeing Bailey on stage, arm up in the air. To me it embodied his strength. This was a very challenging year for Bailey. He went through some unfamiliar chest pains, being tired easily, getting sick more often...but all in all, he came out of it, stronger and wiser.

I have no doubt this little man will do great things. How often can you say that your son has made an impact on many lives? In the course of this year, we have had people approach us and tell us how Bailey's story or knowing Bailey has changed their life. It warms my heart that I can share this amazing young man with the world.

We look forward to next year's walk. Hopefully we will double our size. =) I was a little less organized this year with the many changes in our lives BUT next year we should be good to go. We have some big plans...so watch out! TEAM ZIPPERMAN is going to ROCK the walk in 2010!

THANK YOU!!!

In less than a month...

...is the heart walk. I feel bad because in the midst of the move and all the concern with Bailey and his health and subsequent adjustments. We have got him to lose the excess weight...something he struggled with in the past. It was never because he wasn't active enough, he just LOVED rice. So we have cut down his portions and I think that has helped him some.

I am currently trying to find local corporate companies that might be interested in helping us in our fundraising goals. Wish us luck.

We hope everyone is doing well. By the way, Bailey is doing wonderful!

Bailey, my reminder of strength...

When you start feeling like life is unfair, think of my son Bailey. You see, from birth, they counted him out…only a few hours to live, if he survives, he will be frail and sickly and may even have developmental delays, the list goes on and on. Can you imagine starting off your life like that? But instead Bailey has time and time beat the odds, he’s nearing twelve now. He is not frail and sickly, in fact, he looks like a very healthy young man, who stands proud at 5’3” and the only way you would be able to know that he has a heart condition, is the pale scar that runs down his broad chest; the scar that he proudly calls his zipper. He’s participated in little league baseball and even became the team pitcher. He’s very close to earning his black belt in karate. He thrives in school, achieving straight A’s, participating in band and getting nominated for honor programs.

Bailey could easily throw in the towel and use his condition as a crutch. He could use his condition as an excuse to stop living life BUT he hasn’t. I admit, in the past couple of years, I have felt overwhelmed with immense stress about they curveballs we have endured the past couple of years…to the point where I compromised my own health. But yesterday when I was watching him undergo his stress echo, I realized just how strong my son is. I know he was scared, he never took his eyes off the echo screen and the person doing the echo. But he kept going and did what was asked of him. To see how strong my young man has become is bittersweet. He is no longer the blue baby I held in my arms.

So if my husband and I appeal to all of you to join our team or to help us raise funds for the American Heart Association it is because of the deep love we have for our son. It is an event that we have participated in over ten years. It is our time to celebrate Bailey’s strength…and the strength of all the other “red cap” walkers (survivors). This year with the recession a great issue among all of us, Bailey thought of the recycling drive. Through this drive, he has raised over $300. It was a simple idea, people could collect their recyclables and donate those proceeds to the AHA.

Bailey’s journey is not nearly over. He still has many battles to overcome. Even with the news of his heart slowly weakening, he still remains strong. He still sets his goals and achieves them. His greatest one is to one day be a Cardiologist. When the Cardiologist asked him what subject he enjoyed, he said, “Science and Math.” The doctor was pleased and then continued, “What kind of science do you enjoy?” Without hesitation, “Health Science.” The doctor laughed with enthusiasm. At the scholar’s program he attended this summer, he proudly told family about dissecting a cow’s heart. How fascinating it was for him to see the different parts of the heart. The money raised will help further research on cardiovascular disease and defects so that families like ours will no longer be afraid to dream. It is to help keep our hope alive, that one day, our loved ones will be able to live healthy and normal lives.

So please do not get irate over our request for support. It comes from a very good place. I do hope that many of you are able to join us for the walk. We know it would mean a lot to everyone in our family, but especially to our not so little angel, Bailey. Please follow the link below and join our team and let’s have fun and raise some serious funds! =D

http://heartwalk.kintera.org/sandiegoca/dikitanankids

Greetings from Vista

Hello! As I am typing this, the kids and Ed are sorting through our recycling. I am afraid we won't be raising as much the next few months because we are no longer at the school and at the dojo. =( But we are open to anyone else who wants to participate with us. It was just difficult to continue with us moving out to Vista and we certainly did not want to dump the responsibility on someone else. We do hope that the bins we donated to both places go to good use and that they are used to raise funds for another good cause. I sincerely believe that recycling is the best to raise funds. It is easy, it is something almost everyone can do, and it also helps the environment. I hope our team members are having a relatively easy time with their fundraising.

If you haven't already, come join our team. We are always a blast to be around. We really go out there and celebrate.

MAY TOTAL

Well, not bad! We raised $47.95 in recycling for May! Not bad Menifee! =D We were pleasantly surprised. We keep on chugging along with our fundraising! I must let you know that we may not be posting very much for the next month with our upcoming move. But don't worry, we are still actively raising funds. =) I can't complain about this June gloom. I like not having to run my a/c and having an outrageous electric bill!

June already?

Hello everyone,

I am sorry it has been awhile since we have last e-mailed everyone or blogged. We are all doing well. Bailey has had less frequent episodes. We are still waiting for one more test, but I think that he is doing fairly well. Things have been so crazy here. We have decided to leave Menifee and move back into military housing. It brings us closer to the military hospitals, cuts Ed's commute in half, and will allow us to start saving. It was a hard decision to make, but the best for our family.

BUT we are going to be okay, so do not worry. The real reason we were doing this e-mail update is to share with you Bailey's two upcoming adventures. At the end of the month, Bailey will be participating in the National Young Scholar's Program at Occidental College. He will be attending the Leadership and Medicine strands. He is so excited because he really wants to be a Pediatric Cardiologist when he grows up. I think it is commendable that he is so driven. I hope he continues to go after his dreams. Then in March, he will be attending the People to People conference in Washington D.C. Both of these events were through his teacher's nomination. He is doing amazingly well in school. We could not be more proud of him. Last week he tested for his split belt and although he was getting pretty tired, he followed through. If all continues to go well, he will test for his black belt in 6 months or so.

We know better than anyone how tough it is financially, but if you are able to make a small donation, please do so. This is one of the projects that Bailey has been working on and it would mean a great deal to him to get some support. Even if it means recycling your bottles and cans for a month and donating the proceeds. (Which by the way, I have to go and recycle the donations we received this month...it has been that crazy!) i hope you are able to help us. We only do this walk and fundraising because it affects many of our loved ones, Bailey who was born with a heart defect and our families who have battled heart disease. Thank you.

Where have we been?

Sorry everyone, life has been kind of busy lately. A couple of weeks ago we ventured over to Vegas to celebrate Ed's mom's 60th birthday. When we got back home we were hit with the reality of our situation. After a great deal of serious thinking, we have decided to move back into military housing and leave our home in Menifee. Initially we were going to rent it out, but when we found out what rent was going for, we realized that there was no way we could afford to keep the house. Being 190K in negative equity was a very rude awakening. The truth is, we cannot continue with the way we are living. No savings, no "what if" funds which would be necessary with Bailey's recent series of complications.

But I have always believed that strength comes from surviving some of life's twists and turns. I know we will survive even this. But this still does not deter us from our fundraising goals. May this post all find you in good health and happy spirits.

A Trip to the ER

*sigh*

Yesterday afternoon, evening, and early this morning, we were in the ER. Bailey had some bad chest pains that did not resolve with rest. So after consulting with the Cardiologist, we decided to take him to the ER. When we got there, it was busy (as is the case with most ER's). Apparently one of his EKG's did not come out as expected so of course, it was back to the beds we went. They drew some blood, which is always a traumatic experience for Bailey. They decided to place an IV in case he needed to be transported to San Diego. The blood tests came back okay. The ER doctor told us that after speaking with Bailey's Cardiologist, they suspect Bailey may have angina. So of course Ed and I were very scared.

So we were given discharge orders at about 3 in the morning. We came home, starving, ate, stayed up to digest our food and headed to bed about 430 in the morning. We finally heard back from his Cardiologist around 9 in the morning. This is what she had to say:

I don't think he had angina. All of his cardiac enzymes were normal.
The cardiac enzymes are the gold standard. His heart did not have
insufficient blood supply. If the doctor truly thought he had angina,
he wouldn't/shouldn't have sent him home. This is an adult ER physician
trying to take care of a child with congenital heart disease and is out
of his realm of expertise thus his panic. He treated him like an
adult/old person having chest pain. So don't panic!

That being said, let's make plans to do additional testing to prove his
coronaries are OK. I'll get the ball rolling today and touch base with
you with times/dates. Bailey should be able to go to school. Restrict
him from sports until this evaluation is complete.

Afterwards, I e-mailed her again and this was her response:

No problem. I can only imagine how freaked out the ER doctor was and
how freaked out he made you! He was in a tizzy when we spoke at around
midnight.

Yes, I think he didn't have the luxury of knowing Bailey's baseline ECG
and has little to no experience with a child with Bailey's kind of
heart. Angina at rest is called "atypical angina" and is exceedingly
rare. Bailey doesn't have a mechanism to have atypical angina. He
doesn't have coronary artery disease like an old person. If he had
ischemia/not enough blood flow it's because his heart would be working
so hard it couldn't get enough oxygen out of the normal amount of
coronary blood flow. We just echo'd Bailey. His heart is working hard.
So, while exercise can make his heart work hard and you could see that
he might have chest pain at that point it is hard to imagine any
situation that while he's resting and not stressing his heart that it
would be unable to extract enough oxygen. It just doesn't make sense in
Bailey's situation. Again, his cardiac enzymes were normal confirming
this. This is an adult ER physician applying the adult situation to a
kid with congenital heart disease.

Don't panic. Will touch base again later. Yes, no karate.

So although Bailey is not happy about having to put karate aside for a bit, we are glad he is okay. Thank goodness he has such a wonderful Cardiologist. We wouldn't know what to do otherwise.

A smile on Bailey's face

Today I had the pleasure of attending my daughter's Mother's Day tea. I was so impressed with the preparations that not only the children, but her teacher made. I am so blessed to have such wonderful teachers touch my children's lives. As if that wasn't enough, I noticed Bailey come towards us with a happy face and carrying a bag of plastic bottles. When we got into the car, he said, "I got these from my class!" and he said so with such pride and happiness. I could tell that it meant a great deal to him to get the support of his class. I owe a great deal of gratitude to his teacher for ALWAYS caring so deeply for Bailey and her entire class. I am so glad he has their support! It is little things like these that mean the world to people. Little steps can make a great difference.

Donations Updated

This is a brief post to let you know that that recycling money we collected on the 11th, is now online. I posted the donation. I could have waited until the end of the month, but I thought it better to have the donations on right away. As you can see, the donations are increasing. We hope to get more community support. Wish us luck!

On side note, we have dance competition this weekend. Should be fun. Go Diana's Dance Company!

Getting kids involved with a cause

So I had a conversation with Bailey the other day. He mentioned that a few of his friends from school wanted to check out the blog. He asked if it would be okay and I told him that of course it would be okay. I mean this blog was meant to encourage our community to come together and raise some money. I also think it is amazing to see kids curious about a cause. I think that it is important to get children involved in these causes because it brings awareness that they may not have on a certain condition. My children have participated in the MS Walk, which we did for my mom, who was diagnosed with MS in 1999. We have made donations to those who do the cancer walks and they know it is because my sister beat breast cancer not too long ago. We have made donations to the March of Dimes, because we have friends who gave birth to tiny little angels. I tell them the things we support so that they know a little about what affects others. So for me, it warms my heart to see them get passionate about a cause, whether it be about supporting a mission that provides school supplies to the unfortunate, beef sticks for the troops, candy for the troops, or our heart walk. I think it is amazing to just see them think about something bigger than them.

I hope that some of Bailey's friends are going to be able to join us at the walk. I know it would mean the world to him to have them share in something he cares so deeply about. I think it might be too late to do a penny drive, but maybe we can do something over the summer. Who knows. We will figure out how to get more people involved, somehow.

Poker Tournament

My cousin was telling me about a poker tournament her in-laws were doing for the American Stroke Association. I thought it would be a good thing to consider doing. I know plenty of people who like to play poker. We just have to figure out a place to have it. =) We have to keep the wheels turning. Anyone else got any suggestions? If you do, please leave your suggestions on our comments area. THANKS!

Fundraising Update

Well thanks to the Doll family (Bailey's classmate at the dojo) and the recycling we had a home and got from Ridgemoor's faculty, we had PLENTY of recycling to do this weekend.  In this trip alone, we raised $63.05.  We will hang onto the money until the end of the month and make the donation online, once again.  I have been keeping receipts to post on here, but I have not been able to scan them.  But I have been blogging the amounts on here so that everything is updated and accounted for.  I want people to see and realize how serious about this cause and see where the money is really going.  I thought about using it for shirts and what not, but I will find people to sponsor us to pay for the shirts and really put the money Bailey is working so hard to raise, to the cause.

So thank you to everyone who has made donations to our recycling drive.  We truly appreciate the support.

While I am thanking people, I want to acknowledge some of our sponsors last year.  A big thank you to the following businesses and families that have supported our team with very generous and sizable donations and we highly recommend their services.

Hope Plaza Pharmacy (for three years in a row)

Dr. Michael Erickson Orthodontist (Donation to team and shirts)

Health Plus Inland Empire (Donation to team for three years)

Dr. Anthony Flores 

Temecula Mechanical

Mike and Nora Ross

Odona Galos

Michael Galos III

We hope everyone had a wonderful Easter Holiday!

Visit to Rady's Children's Hospital

It is amazing to me that every time I get so anxious about something, whether it be another test or procedure, anything that has to do with Bailey...everything turns out okay.  Today we went to Rady's Children's Hospital in San Diego.  I have to admit it was hard for me to be back there.  As soon as we started walking towards the hospital I was overcome with so many different emotions.  I was flooded with so many memories of our last visit there, almost nine years ago.  To top it off, we had little Conrad with us, who is starting to look a lot like his brother Bailey.  When we walked the halls I kept thinking about how scared I was after handing over Bailey to get his open-heart surgeries.  We would walk back and forth in those halls waiting for news, trying to keep ourselves occupied, and mostly trying not to go insane.  All those feelings felt so fresh to me.

When we checked in, Bailey got nervous because they put a medical bracelet for him, so I reassured him that we just had to do that because they wanted to make sure they put the right person on the bike.  When we went into the room where they were performing the Exercise Stress Test, it was a little comforting for Bailey to see lockers in the room with names of his favorite football team, the San Diego Chargers.  I could tell he was a little nervous with all the machinery in there, but he remained calm.  I think it was a huge relief that Ed and Conrad were in the room too.

The first thing that Bailey had to do was breathe into a machine.  It looked a little weird because they had to put a clothes pin looking thing on his nose, but he did fine.  Afterwards, they put all the monitors on him, the blood pressure cup, the EKG leads, the head gear that held his breathing monitors.  He was then given the instructions to make sure that the bike remained at 70 and that with each passing minute, it would get harder to maintain.  He did fine, I kept my eye on the EKG and noticed that throughout the whole time, he was not having any irregular heart beats (THANK GOD!), which was something they were concerned about.  

After about 8 minutes on the machine, he was told he could stop.  The doctor told us that he would review the recordings in-depth but from the look of it, everything look good.  He said that usually he sees kids with his condition have difficulty with breathing (asthma, etc.).  Bailey didn't have that.  So once again, Bailey is proving that miracles do happen.  Every day with this child blesses us exponentially.  So with this test being done, I feel so much relief.  We see his Cardiologist in a couple of weeks.  I anticipate that it will be a good visit.

An example of bringing a community together is this recycling drive.  We just found out that a family from the dojo will be donating their recyclables to us.  How very generous!  We also have a secretary of a PTA from another school offering to bring up a possible penny drive at their school.  I am so grateful for the amount of support we are not only getting from our family and friends, but from our community as well.  It is amazing how a child's dedication can bring a community together.

Another possible fundraiser?

So I was looking at one of the ads on the blog and came across this Popcorn Fundraiser.  I thought it would be a great way to raise money.  I know it is something my kids would enjoy and a few other people in our family.  So I am weighing out the options of weather or not it is worth pursuing.  I think it could be something that can benefit us.  We will see how it goes.  I am consulting with my co-captains.  =D  I am in the midst of writing letters to the Menifee community asking for their support with the recycling drive.  Wish me luck!

Camp del Corazon

I know I mentioned that ER featured a program called Camp del Corazon recently.  I have always thought about letting Bailey experience this because I think it would be good for him to be around other kids with heart conditions so he would be surrounded by other people who knew what it felt like to be in his shoes but he has shown no interest.  I was hoping that after watching it on ER, he may be more excited about it, but he wasn't.  

Here is the link in case you were interested:  Camp del Corazon.  I met someone a few years back who was a heart recipient and she told me about how difficult the transition was for her.  Back then I didn't think Bailey would ever need a heart transplant, so I didn't fully grasp how important it was for me to meet her.  I wish I had kept in contact with her.  But the reason why I talk about her now is because she was a counselor at Camp del Corazon.  I wish I remembered her name.  She was a military brat too, was seeing a common Cardiologist.  I hope she is thriving now and over all the complications she was going through.

Bailey has been having a hard time lately.  His condition is really starting to set him apart from his peers.  When he was younger, he could play around with his classmates and not get so winded.  These days, he gets too tired to participate in the games and activities he enjoys.  It breaks my heart because he is trying so hard to find that happy medium of being "normal" and watching his health.  He is not afraid to tell anyone about his heart defect.  We have raised him to not be ashamed of his condition and that his heart makes him special.  He doesn't even fault the kids who give him a hard time...he just wishes he could make them understand.  I am so glad he is such a strong kid!  But I know it has been very difficult for him to be in this transition.   Thank God he's a fighter, otherwise I don't know what I would do.

March Recycling

I know that we only raised $14 from the March recycling but I wanted to make sure that people understood that the proceeds go directly to the heart walk, so I added a few dollars to make the online donation.  It can be my own little donation for my son's hard work.  I think it is important to show him that I really do believe in his ideas.  I have been trying to figure out how to get our small community more involved, so if anyone has any ideas, please send them my way.  I am contacting local businesses and newspapers to get the word out.  Please keep your fingers crossed for us!  Everyone please enjoy your Thursday.

On a side note, Bailey and I watched ER last week and it was about Camp Del Corazon.  I have to say the story they told broke my heart.  When Bailey was born, there were three of them who had similar heart problems.  We used to see the other two boys at appointments and procedures and even surgeries.  Sadly, neither of the two boys made it past kindergarten.  i count my blessings every day that I am given with Bailey.  If this is just a fraction of what I can do for his future, I would gladly do it.

So for those of you who even check this, please, go out there and get involved and do what you can for these causes.  We understand that the economy is tough right now, but that does not stop the need for these researches, community outreaches, or education.  So we have to do what we can to make sure that the fight continues, even if it means taking baby steps.

Giving back

This is our superhero, our Bailey.

I have always taught the kids that it is more important to give than it is to get.  So I try to lead by example.  I wish I could do all the causes in the world, but I can't and I think my family and friends would go absolutely nuts.  So I really put all my focus on the Heart Walk because it affects many people in my life, but more importantly, my son Bailey.  But, when a friend participates in another walk, I will be one of the first to make a contribution because I know if they have as much passion for the cause as I do, every little bit will be appreciated.  In order for people to continue to support you, you not only need to show dedication, but show that you will return the support.

We turned in our first recycling batch.  It was $14.34.  Not a whole lot, but hopefully if we get the word out, more people will want to donate some of their recyclables.  That is what we hope.  Not bad for a couple of weeks though.  We will be sure to keep you up to date on our progress.

Recycling Drive

One of our fundraisers, a recycling drive!  If you know of any other businesses or people willing to participate, please let us know.

Bailey's Condition

The sign above was one of the signs we carried during the heart walk last year, it is everything that is wrong with Bailey's heart.

This is for those who do not know about Bailey's condition, taken from an e-mail from his former Cardiologist:

Bailey is a little tough in trying to find someone with lots of experience. His diagnosis is Heterotaxy, Common Atrium, Common Atrioventricular Valve, Single Right Ventricle, D-malposition (transposition) of the Great Arteries, pulmonary and subpulmonary stenosis, and right aortic arch. This places him in a pretty rare category. There was a recent (2006) paper from Mayoo Clinic looking at their total experience from 1975 to 2004 and only came up with 142 patients with heterotaxy in that time period. Of those, only 26 had a true single ventricle like Bailey, but I can't tell if any of those were the same as Bailey. The paper was looking at long term outcome of Fontan procedures in heterotaxy patients and really came to the conclusion that there has been improvement in survival in this group of patients, but mortality and morbidity remain substantial. And " Discovery of innovative treatment methods is essential. Furthermore, meticulous long-term medical management at centers specializing in the care of congenital heart disease is mandatory."

So future research is a very important component of Bailey's future.  It is a very important component for the futures of my parents who suffer from heart disease as well.  This walk provides hope for families like ours.  That is why we continue doing the walk, year after year.

Welcome to Team Zipper Man

Hello Everyone!

Leila, my sister, had a fabulous idea and I thought I would jump on it.  BLOG IT!  Well for those who don't know me, I am Lanie and my family, friends and I have been participating in the San Diego American Heart Association's Heart Walk for over ten years now.  Why?  Well for several reasons, but one of the most important ones is for my son Bailey.  Bailey was born with a very severe and complex congenital heart defect.  His condition was not discovered until a day after his birth.  Upon discovery, we were told that we were very fortunate he survived a normal delivery, the stress of delivery, he should have been a C-Section.  To make things worst, the medical team told us that they were not sure that Bailey would make it past his first few days.  So we needed to make our calls to our families.  But this is not meant to be a sad story, but a story of inspiration.  From day one, Bailey has been defying the odds, surviving child birth, surviving 2 open heart surgeries and recovering in record time, and all the numerous procedures he has had to go through.  Now we have a smart and dedicated eleven year old son.

So after hearing a story like that, how can you not be involved in a cause that helps not only him, but other children and adults like him that are battling heart disease/defect?  I could not and that is why I continue to share his story in hopes to inspire others to band together and join this cause.  It is a fabulous day of fun and laughter with friends and families.  When you see the sea of red caps (survivors) you cannot help but feel touched and inspired. 

So please, join our team, make a donation, spread the word.  We know the economy sucks, but there are still other ways to get involved.  We started a recycling drive, we are thinking of doing raffles, lots of stuff.  So please get involved!  Let's START!

http://heartwalk.kintera.org/sandiegoca/zipperman

So the meaning behind the name?  Bailey's scar was dubbed a zipper by his Cardiologist and it stuck. Bailey loved having a zipper.  So Bailey's has always been our personal hero, hence Zipper Man.

More to follow....