...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!
Wednesday, August 26, 2009
Thursday, July 23, 2009
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
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
Monday, July 13, 2009
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.
If you haven't already, come join our team. We are always a blast to be around. We really go out there and celebrate.
Saturday, June 6, 2009
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!
Wednesday, June 3, 2009
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.
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.
Wednesday, May 13, 2009
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.
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.
Wednesday, April 22, 2009
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.
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.
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