CHD News

Hello Everyone, How are all of you doing? I am sorry for the mass e-mail but there are so many people to share my great news with. First of all, can you believe summer is almost over? This has been a great summer. I have been going to the movies with friends, sleeping over, went on a cruise, went to Vegas, and even Disneyland. Summer will end on an even better note when I go to Hawaii with my mom to meet my dad. So excited to have him back home. I love my family but when you live with a house full of girls, it gets a little annoying. Let's see, since I last e-mailed, my sisters and I have tried out for the dance team at our studio. It was pretty fun. I am not sure if I will make any of the dance teams, but I gave it my all. My parents say that that's all we can do in life. Just give it our all and really that is all that matters. So hopefully when I see you at the walk, I will have some good news to share. So the exciting news is the e-mail we got this year from the AHA. According to the e-mail we are currently one of the top 10 Moms with Heart Teams. (Mom with Heart Teams fundraises directly to Pediatric related cardiac research.) We are currently #6, nationwide. Last year the Moms with Heart teams raised $75,434 to fund pediatric cardiac research in the Western States Affiliate . With funds raised by Moms with Heart, the American Heart Association was able to fund a $90,000 pediatric cardiac research grant at the Gladstone Institute in San Francisco, CA. One out of every hundred children in the United States is born with an inherited cardiac defect. This study seeks to understand the basis of these heart defects by studying two genes that regulate heart development (or how the heart is assembled/put together). Last year we were ranked #5. Our Top 5 Moms with Heart Teams: Dr. Harake's - Moms with Heart - $10,275 (Santa Barbara, CA) Rayme Elliott - Moms with Heart - $7,199 (Santa Barbara, CA) Joe Cosmano - Smooth Operators - $6,545 (Inland Empire, CA) Megan Harris - Greater Valley District - Team Landon - $6,133 (Boise, ID) Bailey, Nalani, Emily and Conrad Dikitanan - Team Zipperman - $5,075 (San Diego, CA) So I am hoping that you would all consider sponsoring me again. Now that my team has been designated as a Moms with Heart Team, the money goes directly to Pediatric research that helps children like me. This research is so important and so needed. I want to thank you for the many years of support and love you have shown my family and I. I know all of it has made me who I am today. If there is anything I can do to give back to my CHD community, I will do what I can. So please, come walk with us, or make a donation, or share this link. I would greatly appreciate whatever help you can offer. Thankfully, Bailey Have the great rest of the summer! I will be sure to share my great news with you all again! You may have received an email from me before, but I wanted to remind you that I am walking in this year's Heart Walk, a 5K walk benefitting the American Heart Association. I still need your help! Please support me by making a donation today. The link below will take you to my personal donation page. If you prefer, you can also mail me a donation directly. Heart disease is our nation’s number one killer. Your donation will immediately help save the lives of men, women and children who are affected by these diseases. Thank you in advance for your donation!

Sharing the latest news

Good Afternoon 2010 Team Zipperman Members! I hope you are all doing well! I just wanted to share some exciting news with you! Moms with Heart teams raised $75,434 to fund pediatric cardiac research in the Western States Affiliate by participating in Heart Walks across ten states! Thanks for all your hard work and congratulations on being one of the Top 5 Moms with Heart Teams! Moms with Heart teams raised $75,434 to fund pediatric cardiac research in the Western States Affiliate by participating in Heart Walks across ten states With funds raised by Moms with Heart, the American Heart Association was able to fund a $90,000 pediatric cardiac research grant at the Gladstone Institute in San Francisco, CA. One out of every hundred children in the United States is born with an inherited cardiac defect. This study seeks to understand the basis of these heart defects by studying two genes that regulate heart development (or how the heart is assembled/put together). Moms with Heart wouldn't be possible without the hard work, love, and imense passion our Moms with Heart teams devote to their fundraising efforts. Thank you to our Top 5 Moms with Heart Teams: Dr. Harake's - Moms with Heart - $10,275 (Santa Barbara, CA) Rayme Elliott - Moms with Heart - $7,199 (Santa Barbara, CA) Joe Cosmano - Smooth Operators - $6,545 (Inland Empire, CA) Megan Harris - Greater Valley District - Team Landon - $6,133 (Boise, ID) Bailey, Nalani, Emily & Conrad Dikitanan - Team Zipperman - $5,075 (San Diego, CA)

What I have been working on...

These are the pamphlets. We are hoping that people are going to take the time to read it and are inspired by it. What do you think? Any thoughts, suggestions?

Pamphlets

So this year I decided to be a little more adventurous and make a pamphlet instead of a newsletter. Phew, it has been some work! But it is coming along. I thought I would get a jump start on things because I know it will get pretty crazy once Ed gets to his new command. *sigh*

Still looking to do some sort of fundraiser for the walk. I just haven't figured out what that is yet. Any suggestions?

New button!

Well, I realize that with the state of the economy, it is difficult for people to commit to a $25 donation for the heart walk. I wanted to stick to true to our motto of every little bit counts. So we have set up a paypal account to receive donations on our blog. Once we get enough funds we will transfer them onto our team account and people will still get acknowledgment (kind of like what we do with our recycling funds). So for those of you who have wanted to make small donations, can now do so on our team blog! =)

Our little project

Bailey and I decided to do a project together. I am so glad we did. We hope you enjoy it!


The best part for me is seeing Bailey grow to the young man that he is. He's always been a strong little guy. It made me appreciate him a little more (if that is even possible). I have been truly blessed with my children. I hope people see just how amazing this guy is.

If you are reading this, we hope you like it enough to join our team...or support us. =)

http://www.youtube.com/watch?v=Wk0zO_5G-XQ

2010 Military Child Award

So proud of our son Bailey! He was chosen to be a semi-finalist for the 2010 Military Child Award! For those of us who know Bailey, we know how wonderful this opportunity is for him. He was just excited to learn that he was chosen to be in the top 20 (out of 650). What an honor this is. So if you have a chance...please vote!

CHD

I don't have a lot of time, but thought this would be worthy of sharing!

http://yourethecure.blogspot.com/2010/02/news-from-hill-staffers-learn-about.html

TOP 20 and in the running to get the 2010 Military Child Award!

We have pretty busy with appointments and not feeling well and well homeschooling. But we did want to share our great news. Bailey has been selected as one of the top 20 military children. Voting will commence sometime today and I will post the link on here so you can vote for him. =) We are so excited for him! I think he is an amazing child and am so excited to share just how wonderful he is with our military community! Wish Bailey luck!

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.