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!