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Greetings! |
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Since announcing It's My Heart was going National in September of 2007, the growth has been extraordinary! It's not even been a year and on average we are opening over one new chapter per month. We now have 14 IMH Chapters across the the United States and still have more in the works! This is a rate of a new IMH Chapter about every 3 weeks - What a phenomenon! Which quite frankly illustrates the glaring absence of what is needed in our National CHD community. IMH fills the void that has those affected flocking. It's so vital that we ensure support where the journey begins, and that's usually inside the hospital. Our Hospital Programs are meant to bring hope at a time that seems so bleak and frightening. The Comfort Bags are now inside over 30 hospitals across the United States and that number will continue to rise as word spreads throughout the CHD community. If you are interested in learning more about starting an IMH chapter or would like to see Comfort Bags inside a hospital near you, please e-mail info@itsmyheart.org or call 888.HEART.07.
Have you thought about wanting to volunteer your time and talents to IMH? Many of you send correspondence expressing a desire to get involved and I cannot thank you enough for the interest. Our amazing growth has produced many opportunities for those who have expressed an interest to be gratefully filled. Do not permit a lack of volunteer experience detour your involvement. Most of our current volunteers have never volunteered before and express so often how gratifying it is to know their efforts are supporting so many people across the nation. The only way these families can continue to receive support is through your time, involvement and donations. Volunteering truly is a rewarding experience, I urge you to get involved today!
SAVE THE DATE! The 3rd National Congenital Heart Lobby Day in Washington, D.C., will be February 10, 2009. Congress dismisses this week for their summer break creating the perfect occasion to contact your Legislator locally and educate them about America's #1 Birth Defect. Make phone calls, send letters, better yet, send photos of your child, or yourself, so they can see the "faces" of CHD. We need relief for those, perhaps even yourself, who have been inundated with the unexpected costs of surgeries, hospitalizations and prescription costs that come from living with this disease. You can locate your U.S. Representatives here and make it a priority to lend your voice to this cause, you can make a difference! We hope you will attend and help show our Congress the many faces of CHD.
Heart Hugs,
Corrie Stassen |
| Volunteer Meetings |
Thursday, August 14, 2008
Meeting times and location vary by chapter.
"...no matter how big government gets, and no matter how many services it provides, it can never take the place of volunteers."
- Ronald Reagan, 40th U.S. president
For more information in your area, go to www.itsmyheart.org, Click on "IMH Chapters" to see specifics about upcoming events. Make sure you sign up on line to receive e-mails from your chapter by clicking on the link at the bottom of this email.
As always, please be considerate about germs and take precautions if you've been around anyone who has been sick. Most of our children have compromised health. |
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Quote of the Month |
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To understand the heart and mind of a person, look not at what he has already achieved, but at what he aspires to.
-Kahlil Gibran |
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| Dr. Heart to Heart |
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Our insurance keeps changing and we constantly find ourselves needing another specialist for my daughter. Each new office visit means more paperwork, more questions, more frustration. Any ideas?
Imagining the frustration and anxiety caused by the daily task of raising a child with medical needs is daunting! You've heard the expression "it was the last straw that broke the camels back"? Well, after dealing with days, months, weeks, and possibly years of doctors, hospitals, therapist, and insurance companies it can become rather frustrating before you even get started with a new doctor's office.
Remember to take a deep breath! Breathing is a very good thing when anxiety levels are rising. Keep in mind that in a doctor's office they have rules and procedures and need to gather information to make the best medical decisions for your child.
Expectations play a big part in our ability to deal with situations. If you are going to a baseball game, you know in advance about how long the game will be, what types of food will be available and what clothes are most appropriate to wear. If you showed up expecting to order a 5 course steak dinner, you might be sorely disappointed. So let's apply that same principle to going to the doctor.
Some doctor's offices are notorious for long wait times. So be prepared with items for your child to do while you wait. Decide ahead of time that you are going to make this a fun time for you and your child. Look for other kids to meet in the waiting room or a mom who needs an encouraging word.
You can help the process by being prepared for all the questions on the intake forms. Keep a "short list" with diagnosis information, medicines, surgeries and hospitalizations, and other specialists. Print an extra copy for the doctor's chart. Make sure each time you print a copy you date when the information was last updated. Having key dates and names on hand will speed the process for you and also lets the doctor know you are on top of your child's medical care.
Send the doctor a note after your visit if you appreciated the staff, the way he/she gave attention to your child, etc.
Find a friend or family member who will allow you to vent after a hard day. Let them know you just need to blow of some steam and don't need them to fix your problem.
Share ways you pass the time at doctor's appointments with other parents on the Yahoo! message board!
Dr. Heart to Heart would love to hear your questions, please e-mail newsletter@itsmyheat.org. |
| Heart Journey - Mason Remington Speight |
 Mason's story as told by his mother, Anissa Speight.
My day began like other days - an 8:00 a.m. patient that didn't show up for an ultrasound. I had been on vacation and decided to "take a peek at the baby". At 18 weeks I thought I had seen something odd, but attributed it to "a bad angle" or an "artifact". As a Registered Diagnostic Medical Sonographer, I had learned not to over-react. However, now at almost 21 weeks something was most definitely "NOT RIGHT". I would find out later that HLHS is very hard to accurately detect before 20 weeks. After seeking out a scan from the lead tech, he confirmed that he thought it was a very severe defect known as Hypoplastic Left Heart Syndrome.
At that point we started looking for information and what we found was not very encouraging. I met with a perinatologist two days later and received the official diagnosis and the options: palliative care and certain death of the baby within 2 weeks of being born, get a transplant, a series of surgical treatments or termination of the fetus. Again, not much hope. Then we met with Dr. Doug King of Children's Cardiac Center of Oregon. He had reviewed our echocardiogram and told us that we had a chance of a good outcome if we chose the surgery route. He explained everything and we left the office with HOPE!!
Dr. King warned us that this was not an easy road and to expect some bumps...
Mason was born 12/30/2004, 6 lbs 14 oz. He was beautiful, alert, strong and hungry - all wonderful signs. We soaked him in for the next 3 days - enjoying and relishing in every second. January 3, 2005, he underwent the Norwood procedure. The results were not what any of us expected - the saphenous vein graft that had been placed in the repair failed. January 6, 2005 the vein was replaced with the BT Shunt. January 21, 2005, we were finally allowed to take our precious baby home. The victory was short lived; we were rushed by ambulance back to the hospital on February 1, 2005. Mason had developed an annominate artery aneurysm. This caused his heart to swell and could have resulted in complete failure within a few more hours. The next morning surgery was performed to band the aneurysm - a success!! February 8, 2005, we returned home very frightened and anxious. Dr. King warned that because of this complication, Mason might not make it to the next repair or might no longer be a candidate for surgery. However, Mason triumphed and made it to the desired 5.5 months and 13 lb mark for the Glenn Procedure. He whizzed through and we were at home four days later. Soon after we moved to Texas to be closer to our family. We thank God for our doctors in Oregon... without them we would not have Mason with us today.
August 23, 2007, Mason underwent the 3rd stage of his repair - The Fontan Procedure. We were so blessed to have Dr. Charles Frazier at Texas Children's Hospital perform his surgery. The surgery went very well and we were able to have the type of Fontan that doesn't require cutting directly into the heart muscle. Mason did have some complications post-surgery. His heart rate and blood pressure became unstable and we had a very scary 24 hours. On August 31st we were released to go home!!
Mason continues to amaze us with his strength, courage and perpetual happiness. We are very fortunate that Mason does not have the complications that many other HLHS children have. He is in the wonderful care of Dr. Michelle Grenier and he has the support and determination of his family surrounding him. Since his surgery he has become unstoppable and so energetic. He has started to sing and dance, count and learn new words. He had regressed substantially before the Fontan procedure. His most recent cardiology visit in January of 2008 was awesome. His heart function is great and the "Fontan anatomy" is working very well for him. Since August he has grown 5 inches and gained a little over 5 pounds - WOW!
We do not know what the future holds in store - more surgery? A transplant? Experimental procedures? God's plan for Mason is not done. He is an inspiration to his family and all that meet him. His purpose is not yet known, but I know that it is great. God has put us on a truly miraculous path leading us on a journey without a known destination, but He has been with us every step of the way and I know He will continue to guide us and give us strength.
Do you have a heart journey to share? E-mail newsletter@itsmyheart.org for more details. |
| CHD Birthdays |
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Reagan Rosemary Farrow
August 8, 2004
Please send us your child's birthday and picture so we can all celebrate your child's birth!
We also want to celebrate all our angels birthday's too! So, please send us their information so we can include them as well! E-mail to newsletter@itsmyheart.org. |
| Comfort Bag Drives |
 Don't forget, one way to support It's My Heart is to host a Comfort Bag Drive. The Comfort Bag program is growing all over the country. A preschool, St. Elizabeth Ann Seton Day-Out Services, had a Comfort Bag Drive in May. They collected 6 shopping bags of items! Another child, sold drinks in her neighborhood and bought $55 worth of items for the comfort bags from the proceeds! These are just two examples of the amazing generosity and innovation people are putting to good use!
This month school supplies are going on sale and IMH uses some of the same items in our Comfort Bags such as notebooks, crayons, folders and pens. This is a great time of year to help IMH stock up on MUCH needed Comfort Bag items.
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| Donations |
Steve Forbes: Just want to give back a little what this group has given to me and my family, Thanks!
Cary Gentry: In memory of Faith Drouet
Kevin and Amy Drouet: Jeff & Lindsey, We are so sorry for your loss. Our hearts and prayers are with you. Love, Kevin & Amy
Michael Handel: In memory of Faith Drouet.
Michael Flory: In Memory of Faith Drouet
Jennifer Suter: In Memory of Faith Drouet from TxDot
Christine Pinell: In Memory of Faith Drouet
Maria Cristela Vera: Donation in Memory of Baby Faith Drouet
Chris Boylan: In Memory of Faith Drouet
Ryan Drouet: In Memory of Faith Drouet
Paul Drouet: In Memory of Faith Drouet
The Ober Family: In Memory of Faith Drouet who has touched many lives.
Mary Patterson: Memorial Donation for Faith Drouet
Wayne Curington: Behalf of Faith Drouet
Det Norske Veritas IT: In memory of Faith Drouet
The Discovery Companies: In memory of Faith Drouet
Virgnia 'Ginny' Grant: In memory of Faith Drouet
Bruce and Rebecca Oberhoff: In memory of Faith Drouet
Ralph Mastrangelo: In Memory of Jaidon Alexander Charlton
Shell Oil Products: In memory of Faith Drouet
Donations "In Honor Of", "Memory Of", in recognition of a birthday, anniversary or "Just Because" can be made to It's My Heart. Not only will your donation go towards helping those affected by CHD, but also let someone special know you are thinking of them in a very special way. All donations are tax deductible. Your donation will further the work of spreading awareness of CHDs, fund programs such as the Comfort Bags and Care Packages to the hospitals, etc. |
| It's My Heart Chapters |
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It's My Heart is dedicated to our mission which is to provide support, spread awareness, educate and advocate for those affected by Congenital Heart Defects by creating alliances with fellow families, hospitals, support groups, and the community. Creating chapters of IMH throughout the country is imperative to our ability in achieving our mission.
The objective of chapter development advances our opportunity to increase awareness, support and thereby advocate for those affected by CHD.
If you are interested in organizing a chapter or becoming a Regional Coordinator in your area, please contact the It's My Heart National Office at (281) 578.7343 or (888) HEART.07 or e-mail chapters@itsmyheart.org. | |
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