No December Meeting

With all of the holiday festivities

we will not be having a meeting in December.
Please join us again in January.

Our next meeting will be Tuesday, January 27, 2009

at the Ronald McDonald House on Roanoke Ave.

Family Day, Heart Talk

Saturday, February 7, 2009 is the next annual Family Day Heart Talk,

sponsored by the Nick & Kelly Children's Heart Fund http://nickandkellyfund.org/

This year the topics that will be focused on are:

Adult CHD - A Success Story

Adults Living Well with CHD, panel

Parenting your Child with CHD

Medical Technology

Cardiac Catheterization

Pacemakers

This is a free conference held at the Phoenix Zoo from 8:30-12:30

There will be activities available for children 5 years and older.

You can print out a registration form

http://nickandkellyfund.org/familyheart.pdf

Cold and Flu Season

I want to thank Stacy Grohill for joining us for our November meeting!

Stacy Grohill is an acute care PNP at St. Joseph Hospital and Medical Center in the pediatric cardiac ICU. She presented the best ways to keep our children healthy during this cold and flu season.

The predictions are for this year to be a "flu" year, where the flu is seen more than R.S.V. Of course please take all precautions to safeguard your children for both.

Her reccomendations are as follows:

• teach children to cough/sneeze into their sleeve
• wash hands or use hand sanitizer
• keep well hydrated at all times (even if not sick)
• avoid hugely populated places

R.S.V.

• Children up to the age of 2 may be eligible for Synagis Injections. This is a monthly shot taken every 30 days and is given based upon the child's weight

Flu

• There is the option of a flu shot. Please note that it takes 15-20 days to become effective. If your child is showing any cold symptoms wait to get the shot. And DO NOT get the flu shot if there is a history of past adverse reactions or allergies to eggs, latex or dairy.

**And be sure to wait at least 6 weeks post-op before having your child get any immunizations**

If you have any further questions about cold and flu season feel free to contact Stacy Grohill at Stacey.Grohall@chw.edu

November Meeting

Our next meeting is Tuesday, November 25 from 7:00-8:30 at the Ronald McDonald House on Roanoke.

This month we will be discussing ways to keep our children healthy during the flu and cold season.

We will be joined by Stacey Grohall, an acute care PNP at St Joseph Hospital and Medical Center in the pediatric cardiac ICU.

She will be sharing her expert advice with us.

We hope you can join us!

You are Invited to Luke's 2nd Birthday Party

Luke's 2nd Birthday Party!

Members Dale and Cheryl Warren would like to invite our heart families to join them in celebrating Luke's 2nd Birthday.

You're invited to Luke's 2nd birthday party!

Come and enjoy the big park, a bounce house, pizza and birthday cake!

Kids can bring their bikes/scooters/rollerskates if they would like.

Please NO Presents, just come and have fun!

When: Saturday, December 6, 10:00AM to 2:00PM

Where: Anthem Community Park, Train Station Ramada

Anthem Way & Gavilan Peak Pkwy, Anthem, AZ 85086

Directions: Take the Anthem Way exit off I-17 and turn right (east).

Go to the light at Gavilan Peak Parkway and turn right.

Take your first left and you're there!

RSVP: kym.heartmom@yahoo.com

Child Care at our October Meeting!

I am excited to announce that we will have childcare available at our October Meeting!

Karen Alaniz, one of our members, has offered to help recruit childcare for our meetings. Our volunteer for this month is Allyson, who teaches with Karen. She and her husband will be watching our children, doing a craft project, and giving them a little snack. Please RSVP with karenalaniz@cox.net if you will be bringing your children so that we know how many to expect.

Thank you Karen for setting this all up!

Winter Party for Heart Families

Save the Date

Winter Party for Heart Families

Saturday December 13, 2008
1:00PM – 4:00PM

The Atherton’s House
5449 E Pershing Ave
Scottsdale AZ 85254

If you would like to RSVP please contact me

at kym.heartmom@yahoo.com

.

I have confirmation that we will be joined by a jolly fellow in red!

I will post more information as the date gets closer.

Pete and Isie at last year's party!

Check out September's Meeting!

We had a great meeting last night!

It seemed to be more of a party than a traditional meeting and we got to visit with entire families. We were joined by Christy Puetz from "Beads of Courage" who helped us make support bracelets. There were cookies to be decorated (mostly) by the children, and food donated by Crossroads Towne Center Chick-fil-A.

Here are some beaders hard at work.

Becca and Cheryl working with Christy.

Mary and Emily busy creating.

Cheryl and Brody hard at work.


Noah shows off his beads.

Karen and Gabriel busily beading.

Ann helping Anya.

Pete and Isie ready for anything.

Noah and Leo posing for the camera.

Rick and Lexi ready for the camera.

Lukas checking out Dale's nametag.

Dan and Helena hanging out.

Brody, Pete, and Michael making faces.

Notice the shirts that Tricia and Samantha are wearing.
These are from "Hippies for Hope". You can buy them online for $8 a piece and for every shirt sold, one is donated to a children's hospital. Check it out at http://www.hippiesforhope.org/

I look forward to seeing everyone again next month!

September Meeting

This month's meeting should be a lot of fun!

We will have Christy Puetz from "beads of courage" joining us. In addition to explaining her program that all of our CHD kids can join, she will have all kinds of materials so that you can build awareness bracelets or necklaces.

http://www.beadsofcourage.net/

We would like to invite you, your families, and friends to join us!

Please bring the kids :) I think they will all enjoy themselves!

Hope to see you there!

The meeting will be an open house from 7:00-8:30 in the Windsor House of the Ronald McDonald House on Roanoke Ave.

An October Event for Teens with CHD

October 4th, 2008

A workshop for teenagers born with a congenital heart condition.

8:45 am – 12:30pm

Phoenix Museum of History

This fun educational day will be filled with a hands on workshop by the Beads of Courage program, question & answer panel with a cardiac physicians Dr. Stephen Pophal and Dr. Craig Cohen and concluding with a discussion with psychologist Dr. Matt Weyer.

The day will end with a lunch provided at 11:30am

There will not be programming for the parents on this day. Parents are asked to make alternate plans after dropping their teen off at the museum, yet be available by phone.

Location: Downtown Phoenix, at the Heritage and Science Park, between 5th & 7th Streets, and Monroe & Washington Streets. Located next door to the Science Center. www.pmoh.org

In order to drop off your teen for this event, drive south on 7th street, turn right on Washington, right on 5th street (one way), take a quick right into the parking drop off. A volunteer will be waiting at the drop off site, which is the back of the museum. This is where you will pick up your teen after the event at 12:30pm.

Please note that there is a large event taking place in the Heritage Square that day (located at the Museum’s main entrance) so we are using the rear entrance of the museum for convenience.

Please RSVP and direct questions to Lori Takeuchi 602-406-6437

This event is sponsored by the Nick & Kelly Children’s Heart Fund.

August Meeting Summarized

I want to thank those of you who were able to attend our August meeting. I hope that you found it to be informative.


For those of you who couldn't be there, we were visited by Melissa Doggett M.S.R.D. who is a pediatric dietitian for St. Joe's. She spoke with us about ways we could increase our children's calories while maintaining a heart healthy diet. Essentially she discussed the need to provide nutrient dense foods while limiting fillers.


She provided 3 handouts:

• High Calorie High Protein Diet for Infants



• High Calorie High Protein Diet for Toddlers and Preschoolers



• High Calorie Snacking

If you would like a copy of any of these please let me know kym.heartmom@yahoo.com and I will be sure to bring them to the next meeting for you.


Also, if you have any specific questions or concerns about your child's diet you can contact Melissa via email at melissa.doggett@chw.edu





We also had a surprise visit from Seymour Miller the Western Regional Director of Mended Hearts presenting us with our charter. Mended Little Hearts of Phoenix is now officially a non-profit support group.

August Meeting

Our August meeting will be on Tuesday the 26th from 7:00-8:30 in the Windsor House of the Ronald McDonald House on Roanoke Ave.

This month our topic is nutrition. We will be focusing on heart healthy nutrition and the best way to meet the dietary needs of our CHD children. Our guest speaker is Melissa Doggett MSRD. She is a pediatric dietitian working at St.Joe's. You may already know her as she works with the heart kids :)

Please contact either Elayne Slevin at PhoenixAZ@mendedlittlehearts.org or Kym Vierthaler at kym.heartmom@yahoo.com if you have any questions or need more information.

We look forward to seeing you there!

Financial Aide

There has been a lot of discussion on the PD-Heart message board I subscribe to about financial aide for our heart kids. Here is the summary of what was shared with links to the necessary sites.



Social Security Disability, (SSI) eligibility is based on parental income as well as medical disability.

http://www.ssa.gov/ssi/text-child-ussi.htm



Medicaid eligibility depends on several factors. Any child who is eligible for and receives SSI is automatically enrolled in Mediciad. This is a federal program with uniform standards administered by the Social Security Administration.SSI eligibility depends on both household income and medical determination of disability. If a family is over the income guidelines, a child will not get SSI regardless of the level of disability. Two things can change that - once the child is 18, their income alone is considered rather than parental income, and any child who is 'institutionalized' (hospitalized) for an entire calendar month is eligiblefor that month regardless of parental income.

http://www.ahcccs.state.az.us/site/

July's Meeting

Our next meeting will be on Tuesday, July 29th from 7:00 - 8:30 p.m. in the Windsor House at the Ronald McDonald House on Roanoke.

We will have 3 very special guests who will be speaking. Each of them was born with a congenital heart defect and has survived their own surgeries, procedures, and struggles. They will be sharing their stories and the things that their families did to help them.

Our speakers are:

Becca Atherton
Becca was diagnosed with TOF, PA, pulmonary hypertension & asthma. She is currently a high school student living in Phoenix.

Lainika Johnson-Colbert
Lainika was diagnosed with a VSD. Previously she did a reoccuring Friday segment on Arizona Sonora. Now she is hosting a radio program, "Women in the News" on KPHX 1480 that airs on Sunday nights from 10-11:00.

Patricia Milazzo
Patricia was diagnosed with a partially closed aortic valve. Patricia will be able to talk to us about surgery both as a child and as an adult.

We hope you will be able to join us!

Charter Meeting Agenda

The Mended Little Hearts of Phoenix Charter Meeting is being held this Tuesday, June 24th at 7:00 pm at the Ronald McDonald House in the Windsor Room.

The address is: 501 E. Roanoke Ave. Phoenix, Arizona 85004. (Please find parking on the street as the parking lot is for guests staying at the Ronald McDonald House.)

I'm very excited to see you all there!!

Here is our agenda for this meeting:


Charter Meeting

Date: June 24, 2008

Time: 7:00p.m to 8:30p.m.

Location:
Ronald McDonald House, Windsor House
501 E Roanoke Ave Phoenix AZ 85004

Public Session:

1. Welcome and Introductions
   Elayne Slevin, Group Coordinator
2. Mended Hearts and Mended Little Hearts
   Seymour Miller, Western Regional Director of Mended Hearts
3. Ronald McDonald House
   Ronald McDonald House Representative, Night Manager
4. Children's Rehabilitative Services (CRS)/ Arizona Department of Health Services
   Anne Chase, LCSW
5. Phoenix Children’s Hospital, Cardiac Program
   Erika L. Wintering, MSN, PCCNP
6. Overview of Group Structure and Group Goals
   Elayne Slevin, Group Coordinator and Kym Vierthaler, Educational Coordinator
7. Question and Answer
8. Charter Signing

Reminder:
We will have a support meeting on the last Tuesday of each month. Our next one is scheduled for July 29th 7:00p.m. at the Ronald McDonald House, Windsor House.

You are Invited to our Charter Meeting!

You are cordially invited to join us for the Mended Little Hearts Charter Meeting on Tuesday, June 24th at 7:00p.m.

Mended Little Hearts is a nationwide support group that works to provide hope, help and healing to families and caregivers of children with heart defects and heart disease. Parents and Caregivers with children who have been diagnosed with a heart defect need to know that they are not alone, and that there is hope in the midst of their crisis. We will be sharing more information about how Mended Little Hearts hopes to provide this support to our heart community.

Please join us at the Ronald McDonald House of Phoenix located at 501 E Roanoke Ave, Phoenix AZ 85004. We will be meeting in the Windsor Room. Please find parking along the street as the parking lot is for families staying at the Ronald McDonald House.


Please feel free to contact me with any questions and I look forward to seeing you!


Elayne Slevin
Mended Little Hearts of Phoenix
Group Coordinator
PhoenixAZ@mendedlittlehearts.org

Next Meeting

Our next meeting will be on Tuesday, June 24th, 2008. It will be held at 7:00p.m. in the Windsor House of the Ronald McDonald House.

This will be our charter meeting! Please join us so that you can sign the charter and make our organization an official non-profit support group!

I will be posting more information about the meeting's agenda as the date nears.

Please contact Elayne Slevin, group coordinator at PhoenixAZ@mendedlittlehearts.org or Kym Vierthaler, educational coordinator at kym.heartmom@yahoo.com if you are able to attend.

We are meeting today!

Welcome to the new page of Mended Little Hearts of Phoenix!
This is still a work in progress but I am excited to begin sharing it with you.

Eventually I hope to have a slideshow with our Heart Babies (please email a picture if you are interested to kym.heartmom@yahoo.com). There will also be links to valuable CHD information and of course updates for the group itself.

Tonight will be our second meeting. We will be meeting in the Windsor House of the Ronald McDonald House at 7:00p.m. The address is 501 E Roanoke Ave Phoenix AZ 85004. Please remember to park on the street as the small parking lot is for the families staying there.

In addition to sharing stories we will be talking about resources and I'm pleased to be able to share this new website!

I hope to see you there :)