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.