Update on Hope for BraveHEARTs

Front of shirt $10

Back of shirt

Close up of back of shirt

Chd Magnets $5

HOPE for BraveHEARTS
Raising Awareness*Supporting Research*Spreading HOPE
www.hopeforbravehearts.org
PO Box 2924
Irmo,SC 29063

We are now a non-profit organization that is dedicated to helping fund research for Congenital Heart Defects, supporting those affected by CHDs and raising awareness. Along with funding research, Hope for BraveHEARTS, provides BraveHEART Baskets for children from ages 1 to 10 who are recovering from heart surgery at the Medical University of South Carolina.

My good friend, Shannon, and I decided to start this organization after we both had children who were born with CHDs. Congenital Heart Defects are the most common birth defect and the number one cause of birth defect related deaths. This year alone, approximately 4000 children will not live to celebrate their first birthday. The children that do survive will face a lifetime of procedures, tests, heart surgeries and cardiologist visits. It is our goal to raise money for CHD research to assist in non-invasive surgical alternatives, better surgical options and finding a cure for CHDs.

We have a few things going on that we need your help with. First, we are getting a calendar together with our CHD warriors pictures. If you know of anyone who is a CHD warrior and would like them to be in our calendar (any age including Angels) , please send the picture with their name and diagnoses to jessaro77@yahoo.com. We will be producing this calendar for the 2012 year.

Second, we are collecting recipes to gather in a cookbook. We will be joining forces with a group in Michigan called Ethin’s Heart Still Beats to sell these cookbooks to raise money for our cause! If you would like to contribute please send recipe, name, if you are related to or know of a CHD warrior, and if you have any nutritional info on the recipe that would be great! Also, many of our warriors have to be on a fat free diet for 6 weeks or so after surgery so if you have or know of any fat free recipes that would be appreciated just send them to jessaro77@yahoo.com.

We are also selling t-shirts for $10 a piece. The proceeds from those go to fund out BraveHEART Baskets. We also accept donations for the BraveHEART baskets. Shannon and I try to get as much fun in them as we can. Currently this is what we are putting in the baskets:
Stuffed animals
Books
Coloring books/Activity books
Note pads
Fun pens and pencils
Crayons/markers
Small toys
Socks
Cups
Fun toothbrushes (it is very important for your heart to have good dental hygiene)
“beauty “ items girls
Balls
Matchbox cars
Cards (playing/activity/game)
Crafts
Puzzles
Games
We make these baskets for boys and girls ages 1-10 and do age appropriate baskets.

We just had our first Golf Tournament on Saturday September 25,2010 and it was a great success. We had 103 golfers come support us. It was a great day! Some other things we have coming up are a breakfast at Fatz Café on October 23rd and at Christmas time we plan on going down to the Ronald McDonald House in Charleston, SC to feed the people who are staying there.

We plan on bringing special Christmas baskets to the children and a little something for the parents. We are also giving the nurses and staff at the PCICU and 7C (those are the heart floors) a little treat too because they are tremendous caregivers and take care of the patient AND families! We are planning on doing a coffee sale too but I will let you know more about that later.

Some ideas that we have been tossing around for the future is making Parent Care Packages, doing some different things at the AHA Heart walk in Columbia and Charleston and some fun things during CHD week in Feburary.

I also have CHD car magnets for sale at $5 a piece. Please contact me at jessaro77@yahoo.com if you would like one.
We are very excited about this venture and bringing HOPE to our BraveHEARTS! Thank you for all of your support!

Jess

Golf

Yesterday Hope for BraveHEARTS had a golf tournament. It was very successful! We had a great time and raised a lot of HOPE for our little BraveHEARTS! Lorelei was cheering for the golfers (well that was really keeping her occupied while we set up the prizes and check in everyone!) We had several hole sponsorships but 3 in particular John and I are thankful for! Newberry Pathology is my mom who Lo calls Memaw. Chapin Pharmacy is where I work and Lyle Trophy Shop are our good friends who have Lo's heart buddy Zeb! Thank you to all of our hole sponsors, those that donated door prizes and those who played! Thank you to Ms Rae for being there to support us!

We have Hope for BraveHEART t-shirts available for $10 a piece if anyone would like to buy some, just contact me and I will let you know what to make the checks out to and all that good stuff. I will post some pics of the t-shirts soon!

BraveHEART Baskets

Shannon and I made another 18 BraveHEART Baskets today and we are in need of some supplies if anyone would like to donate! Each basket consists of:
a stuffed animal
an activity book/coloring book
an activity (puzzle, game,craft)
cards
toys
"beauty" items for girls (bracelets, hair do-dads, nail polish, lip gloss,etc)
pens/pencils
crayons/markers
a book
a cup
socks

We are in desperate need of socks, cups, pens and pencils and toys for girls. I sound like I'm begging and I am not trying to but donations would be greatly appreciated!

On Saturday, we are having our 1st Golf Tournament and I am sure it will be successful! I will definitely post pics from it!

What a difference a year makes

9/21/2009 ---> 9/21/2010

At



this time last year we were in a waiting room with Lo before her second surgery, trying not to lose it while they took her away and waiting 8 hours for them to finish her surgery. We LOVE everyone at MUSC and they took good care of Lo and of us! Please remember to pray for all the little ones down there having surgery and recovering from surgery.

Emotions

Yesterday, Lorelei found some stickers in the shape of hearts and wanted one to stick on herself. A little bit later she came to me with the sticker that was folded over and said "My heart's broken." I cannot explain the emotion I felt when she said that, a bit of sadness and awe I guess. She has no idea about her heart and here she is telling me that it is broken! She and her condition are the reasons I do what I do everyday and why my friend Shannon and I started Hope for BraveHEARTS. There has been a stride in the CHD movement.

" At 2:40 eastern time today, the national committee on newborn screening voted to YES to recommend pulse oximetry screening for critical congenital heart disease be added to the newborn screening uniform panel."

This was taken from a facebook post of one of my CHD Mama friends who copied it from blog4chd.com. This is exciting to us because if every newborn had the pulse ox test before they go home, many CHDs will be found and lives could be saved!

Lorelei started throwing up Friday morning at 2:30am but is now feeling better, thank goodness. There is nothing like doing laundry and giving a kid a bath at 3am. I am a Mom and that's what I do! Thank goodness its not all the time.

September

We have plenty of things going on this month. We have birthday parties and a golf tournament but what really starts is the getting ready for fall and all the activities. I would LOVE to go apple picking and pumpkin picking this year. I can't wait to start cooking and baking again!

I have also started Christmas shopping, I know, I know its early but I like to get it done so I DON"T have to go to the Harbison area (shopping area) after Thanksgiving. I am just lessening my stress! John and I went yesterday and put Lo's Christmas on Lay Away! I love it. We get her done and over.

I have to start thinking about Halloween and I think that Lorelei is going to be Minnie Mouse this year. I can't wait to get her costume.

Then there's Thanksgiving to think about. This is my FAVORITE time of year. AND we are going to NY this year for Christmas so its going to be fun!

Hope For BraveHEARTS

We are now an up and running Non-Profit Organization! We are working on getting tax deductible status too. On Saturday, September 25 we are having a Golf Tournament, actually its not ours per se but we are getting the profits from it! We are so excited! If anyone wants info on it just email me at jessaro77@yahoo.com.
We have several things coming up in October too! We are so excited about this organization. We will have t-shirts soon and I will let you know when we are selling them.

We will be donating monies that we receive to MUSC research in Pediatric Cardiology and buying things for our BraveHEART Baskets! We have given out several baskets already and the kids just love them! We are always taking donations for them. We give baskets out to children ages 1 to 10. We try to put a stuffed animal, toys, books, crafts, cup and fun stuff in the baskets and all the baskets have a poem in it. If you want to check out our website www.hopeforbravehearts.org

Wishful Thinking

She wants it to get cooler just like I do!

Another meaning of my child is blue...

I turned my back for 1 second and when I turned back around, she looked like this! Thank God for washable markers :O) After washing her hands and arm we sat back down and I noticed that she had colored her feet too. I didn't get any pics but I was laughing a lot!

Favorite Picture

This is one of my favorite pictures of Jack and Lorelei. Jack just had to hold her hand while we were walking through the airport. He was very protective of her, especially once we were on the plane. (He has flown a few times but acted like he does it all the time.) He kept asking Lo if she was ok and if she was buckled up, it was too cute. I can't wait to see how they are at Christmas.

Our Anniversary

On Friday September 3rd, John and I celebrated our 6th anniversary (which is really Sept 4). My mom watched Lorelei while John and I went to the Melting Pot to celebrate. If you don't know what Melting Pot is, its a fondue restaurant. We had cheese fondue, salad, I had a mix of beef, chicken and seafood, John had a mix of the same but with Cajun seasoning on it. Last we had the BEST chocolate fondue! We had a great time just the 2 of us but of course all we talked about was Lorelei! I guess that comes with being a parent! So Happy Anniversary John! I love you!

Birthdays and Anniversaries for August AND September

It seems that I forgot August birthdays and anniversaries so hear goes:

HAPPY BIRTHDAY to:
Mason Friedel (John's cousin)
Shannon Howard (John's cousin)
Riley Rhinehart (John's cousins daughter)
Hailey Wilson (John's cousins daughter)
Ellen Bilak
Sydney and Shelby Hanson (John's cousins twins)
Kayla Howard (John's cousins daughter)
Shanice Jenkins (Johns cousins daughter)
Mike Vasco (John's uncle)
Logan Friedel (John's cousins son)
Jacob Hendricks (John's cousins son)
and Jimmy Friedel (John's uncle)

HAPPY ANNIVERSARY to:
Sharon and Les Loysen (My aunt and uncle)
Timmy and Ellen Wilson (John's uncle and aunt)

For September:

HAPPY BIRTHDAY to:
Dave Garuccio (John's cousins fiance)
Colin Wilson (John's cousins son)
Joan Ross (my cousin)
Michaela Clare
Kaylee Risher (John's cousins daughter)
Regan Hollis
Grandma Mary Friedel (John's Grandma)
Les Loysen (My uncle)
Jacqueline Edwards (My aunt)
Mark Wilson (John's cousin)
William Porfirio
Olivia DeMatteo
and last but not least a special Happy Birthday to Brian Vitale who celebrated his 3rd birthday with Jesus and the angels~

HAPPY ANNIVERSARY to:
Peter and Jacqueline Edwards (my aunt and uncle)
Jessi and AJ Porfirio (Good friends)
Ryan and Amy Wilson (John's cousin and wife)
Mike and Margaret Vasco ( John's uncle and aunt)
Jared and Danielle Friedel (John's cousin and wife)
and we celebrate our 6th anniversary this month!

Under Construction

Please be patient while I am updating a few things on my blog, I have some posts I want to write and hopefully they will be done today or tomorrow. Thanks :O)~!