A Letter
from the President
A Letter from the President
By Rich Reinsburrow
Another Hershey Hearts year has gone by and I wanted to take this opportunity to thank Judy Bryne. Judy began
working with Hershey as one of the co-chairs for the visitation program. Judy opted not to run for a second term as vice
president allowing an opening for a new face. Judy, I will miss you at the meetings. Thank you so much.
If you missed the picnic, you missed a great time. The clowns and face painters were back. We had an interactive
puppet show by Pop's Puppets, we had snow cones, and Hershey Hearts gave out Hershey Hearts t-shirts. You also
missed the election of our new Vice-President, Paul Sipe, and re-election of our
Member-At-Large, Eric Johnson. With Paul, having been elected to this position
that left a Member-At-Large position, open. I am pleased to inform you that Bonnie
Stauffer was appointed to the open Member-At-Large position at the August board
meeting. We are currently looking for some additional individuals to step up and take on some of the responsibilities that many
of the board members have been performing. We are looking for an editor of the Hershey Hearts Newsletter. This person
would be responsible for gathering articles from various individuals, proofreading articles, developing new ideas for
the newsletter, and coordinating the printing with our printer. We are also looking for someone to be the chairperson of the
picnic committee. This person would be responsible for coordinating the annual picnic. If you are interested in either
of these positions, or would just like more information please contact me at
rreinsburrow@aol.com.
Basket Bingo
By Terisa Johnson
It's the time of year again to start planning for next year's
fund-raising events. The Hershey Hearts Basket Bingo will be held on
Sunday, April 28, 2002 at 2:00 P.M. The Basket Bingo will be held at the
Red Lion Senior High School cafeteria. We are in need of ideas and also
volunteers for the day of the bingo. If anyone knows of someone or wants
to sponsor a basket please contact Terisa Johnson by the first of the
year. You can reach Terisa at terisasbaskets@blazenet.net.
Wish List
By Jill Hester
The Survival Kits that Hershey Hearts is providing to our families when their child is receiving treatment at Hershey
Medical Center is an on-going project and continues to be well received and appreciated by the families. They are an
important way that Hershey Hearts supports and helps our families, and it does account for almost one half of Hershey
Hearts' operating budget. If you would like to donate any items (perhaps in honor of
a birthday, special occasion, etc.), or can obtain donations for the Survival Kits, the following is our "Wish List":
. 45 minute phone cards
. Individually wrapped snacks
. Mints or hard candy
. Toothbrushes and toothpaste
. Purse size packs of tissues
. Pens
If you are interested in making a donation, or if you have any questions, you may contact me at
glennhmom@juno.com or call the Hershey Hearts number at 1-800-864-2349 mailbox
#3388.
Visitation Committee
By Kelley Houtz
Visitation Committee members should have received their new schedules in the mail. Please be sure to review all of the
information that was sent in your packet. We have been working on a new idea to increase the
number of families that we are able to make contact with. A new "Sorry We Missed You" card will soon be found in the
portfolio. Please use these cards if the family is not available. Simply write your name and phone number in the space
provided and place the card in a visible spot for the family to see.
The new denim shirts with the Hershey Hearts/Visitation logo are done! Look for them to arrive in the mail soon.
For those of you that are not involved and would like more information on the Visitation Program, please contact
April Weaver nontradmom2001@netscape.net or Kelley Houtz at bhoutz@paonline.com.
Heart Beat Auction/Raffle
By Jill Hester
Our third Heart Beat Auction/Raffle that was held the week of July 9th-13th, 2001 at the Hershey Medical Center was
another great success, raising $7,393.00 for Hershey Hearts. We sold 2,912 Tier I tickets ($1 tickets), 826 Tier II ($2 tickets),
and 828 Tier III ($5 tickets). Again, we had wonderful prizes thanks to about seventy- five businesses and individuals who
donated prizes or made a cash donation to purchase prizes. Our grand prize was a "Plan Your Own Vacation" Travel Gift
Certificate to Central Penn AAA and American Express gift cheques valued at $1,700.00. Congratulations to Ralph
Hoerner of Hershey on winning the grand prize! Thank you to the following people that helped to solicit
prizes, set up the auction at the Medical Center, sell tickets and draw the winners: Tom, Joyce and Danielle Teeter, Joelle
Scholl, Bob and Renee Garvin, Jim Hester, Tony and Judy Byrne, Allan and Jenn Echard, April Weaver, Memo and Laura
Raineri, Shari Keyser-Groff, Paul Sipe, Terisa Johnson, Kelley Houtz, Kelly Andre, Olga Blouch and Rich and Wanda
Reinsburrow. Also thank you to Michael Andre for donating and printing the tickets for the auction.
I'd also like to offer my appreciation to all of the Hershey Hearts members that supported the auction by buying tickets
and /or selling tickets to family, friends, co-workers, etc. We always have a great response with tickets being sold by
mail-ins. THANK YOU FOR SUPPORTING HERSHEY HEARTS!
Why Scrapbooking
By Bonnie Stauffer
Many of you participated with the September Fund-raiser with Creative Memories! Thank you for your support and
generosity! Others of you were unable to attend but still have a desire to impact Hershey Hearts through Creative Memories.
The ongoing opportunity for you is that I will continue donating 10% of my profits to Hershey Hearts YEAR-ROUND!
Just request the donation on your order form! There are still others of you that do not know the
advantages of utilizing Creative Memories to store your photos and for enhancing your memories:
. The Mission Statement behind CM is to Preserve the Past, Enrich the present, & Inspire Hope for the Future! This is the
foundation for any parent's dream when raising a family!
. Your grandchildren will lose every toy you ever give them, but they'll keep your scrapbooks and photo albums forever.
. If your house burns down in a fire, all the contents can be covered and replaced by insurance. Except your scrapbooks
and photographs.
. Often the only knowledge many people will ever have of you after you are no longer on this earth is through your
scrapbooks and photographs.
. When you dream or think of a previous event but can't remember the details, your scrapbooks and photographs will
help jog your memory! Believe it or not, there are some events that at the moment we think we couldn't possibly forget-we
still do!
I hope that I can assist many of you in creating meaningful and fun albums for you and your family members to enjoy
and to cherish. Please call if you would like more information! Keep
scrapbookin' - Bonnie.
Treasurer's
Report
By Jill Hester
I would like to thank Tom Teeter for his dedication as Treasurer for the past two plus years and for making the
transition as the new treasurer an easy one. I would also like to thank Tom and Joyce for continuing to pick up and distribute
the mail that comes to our post office box address. In the June newsletter, it was reported that the total balance
in both our savings and checking accounts as of May 21, 2001 was $12,689.90. Since that time, we have finalized the Basket
Bingo held at the end of April, and held the Heart Beat Auction in July. The Basket Bingo brought in $5,185.73. For the Heart
Beat Auction we had $2,025 donated towards prizes (which we used $1,990 to purchase prizes) and $7,393 in ticket sales,
with $425.10 in expenses to run the auction. We received a $500 grant from Highmark Blue Shield and also a $500 grant
from Wal-Mart. We also received $495 in various donations. We took orders for Hershey Hearts denim and golf shirts at
the picnic for a total of $1,284. Interest earned in the savings account in the past four months was $130.58.
Our expenses included $893.69 for Survival Kits, $1,389.91 for printing and mailing of the newsletter and new
brochure, $70.33 for the Family Meal project, $2,098.05 for Hershey Heart logo tee shirts that were handed out to all who
attended our annual picnic, $436.62 for the picnic, $1,871.60 for the denim and golf shirt orders (of which $862.50 are for
visitation program volunteers), and $292.59 in miscellaneous expenses. The total balance in both our savings and checking
accounts as of September 21, 2001 is $20,735.32. As always, if you know of anyone who would like to make
a donation to us or contact us for any other reason, our mailing address is:
Hershey Hearts
P.O. Box 163
Hershey, PA 17033-0163
Hershey Hearts
Web Page
By Beth Dundorf
If you haven't logged onto www.hersheyhearts.org
lately, you might not recognize it. Here is a list of several updates/changes recently made:
* We now have an email address attached to our web page. So for those of us that may have questions, or need
to update your mailing address it can be done online.
* We have a new page titled "EVENTS". The first plans
for this is to list the prizes available for the Heart Beat Auction. We will also use this page for Picnic information,
support group meetings, and any other special happenings.
* We also have made all necessary updates for links to The Children's Heart Group site. As well as updated the
links to email all the cardiologists.
If you're surfing the web hop over and check it out.
I'd be happy to hear any feedback.
Achoo!!!!
What to Do???
Mary Lou Box RNC, MSN
It's that time of year again, - sniffles, allergies, and colds. Children with heart disease are much more prone to get colds
and other illness more quickly than a child without heart disease. Since many children with heart disease are taking
heart medicines, use of many over-the-counter medicines to treat colds is not recommended because these medicines may
affect how the heart medicine works. Children with rhythm problems of the heart are particularly affected by use of over-the-
counter cold preparations because many of these medicines contain stimulants that can aggravate the heart rhythm and
increase heart rate. The following medicines are suggested for colds and
allergies:
. Tylenol - Infant drops, Elixir, Tablets- for fevers, aches
and pains
. Avoid Aspirin unless specifically prescribed by your cardiologist
. Motrin, Advil and Naprosyn preparations can be used except for those children who have had a heart transplant or
are on Coumadin therapy
. Benadryl - for congestion, allergies
. Saline (salt) Nose Drops for stuffy noses All other cold preparations have a stimulant in them that
can react with heart medicines or cause rhythm problems of the heart
. Antibiotics - only as prescribed by your doctor for bacterial, not viral infections. Any child on Coumadin therapy
and receiving antibiotics will most likely need to have a prothrombin time checked more frequently while on
antibiotics.
Dosage of any of the above medications is determined by the child's weight. Please check with your family doctor or
pediatrician for proper dosages for each child. Children with heart disease who get colds or other illnesses that linger and
don't seem to get better within 1 - 2 days should be seen promptly by the family doctor. It's better to be safe than sorry!
I hope this gets you through the winter months a bit more smoothly.
Hershey
Hearts Fluted Wine Glasses
By Paul Sipe
We are currently taking orders for Fluted Wine Glasses that have the Hershey Hearts logo etched in them. The cost is
$25.00 for a set of two (2), which includes shipping and handling. Please make checks payable to Hershey Hearts.
Orders will be shipped the beginning of December.
Pediatric
Corner
Here are some questions asked of parents and their responses.
How true they are.
Q. What has been the most helpful thing health professionals have done for you?
A. Taking the time to explain things and listen openly to all questions.
A. Explain things to the child also.
A. The most helpful thing is when the doctors take the time to explain until you really understand what is going on.
A. If a doctor goes out of his way to make sure everything goes smoothly, if he can make it happen.
A. The most helpful thing a Dr. can do for us is not only treat the "disease", but also the person / the family.
A. We found a surgeon who spoke to our teen-aged son with respect, like he's part of the decision making process,
which he is!
A. The most helpful thing has been when doctors and medical practitioners allow me to be a part of the decision
making process.
A. I really appreciate when our doctors admit they don't know, and they get on the phone or the Internet and try to
find some answers, instead of giving us some verbal runaround.
A. I respect a doctor more when they admit they may not know the answer, and refer me to another source.
Q. When you are told to treat your child as "normal" - is
that a hard concept to understand and to do? What would make it easier?
A. At first I was very scared to have my son home without a sat monitor, but the docs pounded into my head to look at
him, and to know from looking at him when something was wrong.
A. Normal is a hard concept when the chd baby is your first child.
A. It's hard to know what "normal" is, especially if it's your first child.
A. I think it is initially daunting, but then if that is really meant, and the medical workers do give you credit for your
insight into your child, it empowers you in a very important way. What is so frustrating is the small amount of power,
knowing that you are given the charge of watching over your child is awesome.
A. It's pretty easy to treat them normally - but you will always treat them differently.
A. I have always treated my daughter with as much normalcy as I can muster.
A. As a first time mom, I have nothing to compare it to. I don't know if I would treat a "normal" child differently.
A. I find it hardest to treat my son normally when he is playing sports.
A. We have always tried to treat our daughter as normally as possible, however, its hard not to spoil her.
A. I still find it hard after 13 years to treat my son the same as my other children.
A. "Normal" is relative. I think it's more appropriate to treat your child as an emerging individual. When you have
more than one child, you don't treat them the "same". Each child requires different techniques and handling.
Q. How can health professionals make it less stressful,
overwhelming, awesome?
A. Take time to talk to us and not above us.
A. Be more empathetic.
A. Take time to be a friend to us and to our child; listen.
A. It is a stressful, overwhelming thing. I'm not sure that anyone can change that.
A. I think we need parameters. It is a comfort to me to know how many respirations are too many, heart rate, etc. I need
the guidelines of when to worry.
A. I don't think a professional can ease the burden.
A. Give examples of what other kids with similar conditions can do and have done.
A. Doctors that have no clue what to do with us should admit it, and send us to someone else immediately, and not
treat us like normal adult hearts with problems.
A. Explain everything so the patient or parent can understand.
A. As an adult with TOF, I am amazed at the cardiologists who have no idea what CHD means to treatment and care.
A. My pc is great about checking back with our hospital and ensuring good communication with our child's
pediatrician. To me this is critical.
Q. What suggestions do you have for doctors with regard
to "bedside manner"?
A. Be open and friendly, understanding, and listen to questions openly.
A. Treat the parents as intelligently as you can, explain, explain, explain, and be patient while they let things sink
in.
A. Be informative, human, and receptive.
A. Come down to the "layman's" level.
A. Explain patiently to us. When the news is bad, be sensitive to our privacy and emotions. Don't give us bad
news in public.
A. Don't make assumption about parents. Some are just in shock.
A. Bedside manner should be extended to the child also, especially when they are old enough to understand that
things are bad and parents are upset.
A. Don't assume that parents are all the same. For every parent, you have a different personality type. Bedside
manner is significantly improved when the doctors deal with you as an individual.
A. I, for one, resent being called "mom", or being referred to as a generic "we". It takes away my personality and
makes me feel like I'm part of a cattle call.
Coming Events and Reminders
Mark your calendars for the following events in 2001 & 2002:
Hershey Hearts Support Group Meeting Saturday, October 20, 2001,
from 1:00 -3:00 PM in Dining Room A & B at the Hershey Medical Center.
Hershey Hearts Support Group Meeting Saturday, March 16, 2002.
Basket Bingo Sunday, April 28, 2002 at 2:00 PM in Red Lion Area High School Cafeteria.
Board Meetings are held the third Monday of every month.
If you know of a family that would like to receive this newsletter or would like to be removed from the
mailing list, please call 1-800-864-2349, mailbox #3388. .If you are moving or have an address change, please call Hershey Hearts at 1-800-864-2349, mailbox
#3388 to give the correct address. .If you have any questions, suggestions, or entries for the newsletter please call Hershey Hearts at
1-800-864-2349, mailbox #3388 and someone will return your call.
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