The Friedel's

Hope for BraveHEARTS Holiday Project

2011-09-16T15:12:00.000-07:00

On Saturday, October 1, 2011 we will be getting together to make blankets for the patients in PCICU and 8D at MUSC Children's Hospital. We will be meeting at Crooked Creek Park in Chapin at 2pm. Just bring (2) pieces of 1 to 1.5 yards of fleece and scissors and what you would like to drink. Hope for BraveHEARTS will be there with our Heart Warriors and snacks to boot! We are also bringing card making supplies so the kids or even yourself can make a card to put with your blanket.
This is NOT limited to Heart Families, we are inviting the entire community to come out and support HBH and the kids at MUSC!
Thanks for you support. Please let me know if anyone needs anymore information!

You can also email bravehearts@hopeforbravehearts.org to RSVP or if you have any questions!

Thirty One

2011-09-16T15:10:00.001-07:00

I am now a Thirty-One Independent Consultant. I am so excited to be a part of such a great company! Please let me know if you need anything and visit my website at www.mythirtyone.com/77596. Thanks!

Lorelei's Heart Story

2011-08-16T05:09:00.000-07:00

Lorelei was born via c-section in April 2008. I was having some blood pressure issues so we had to deliver her 2 weeks early. She was perfect. The next morning her cardiologist heard a murmur and said he would listen to her again and if it was still there he would call for an ECHO. I didn't think anything of it because I knew that a lot of babies were born with murmurs. Dr. B came in and heard the murmur again and called for an ECHO for the next morning (Mon). Well we were lucky, the ECHO technician was there that Sun afternoon and did the ECHO. Next thing we knew we got a call from Dr. B saying that there was something wrong with Lorelei's heart and a Pediatric Cardiologist was coming to explain everything to us.

Meanwhile, Lo was taken up to the NICU to get ready to be flown to MUSC in Charleston were she would have to have surgery. Dr. S came in to talk to us and told us Lorelei has an Interrupted Aortic Arch and a VSD. She would require surgery. That night, she was flown to MUSC and we had to make phone calls. I was still in the hospital because of my blood pressure issues so I was released the next day. That Monday we drove to Charleston (the LONGEST 2 hours of my life). She was in the PCICU and had all of these tubes and wires coming out of her. All I could do was cry!

Thursday she had her surgery. John and I both held her before she left and she did well through surgery. We were in PCICU for a few days then moved up to 7C where we had to learn how to feed her again and take care of her. We brought her home almost 2 weeks later. We learned how to deal with reflux and fussiness and to take care of her "zipper".

We went to Dr. S every 3 months for a check up and a little over a year after her first surgery, we learned that she required a second surgery for some sub-aortic stenosis issues. Some tissue had grown under her aortic valve and was increasing the pressures in her heart. When Lorelei was 17 months old Sept 2009, she had her second surgery. We went in on a Monday and gave her to the surgeons for a second time. One of the hardest things I had to do. She did awesome again and we were discharged from PCICU the Friday of that week, 5 days and she got to go home after heart surgery! She is my Rock Star!

We have been visiting her Pediatric Cardiologist every 6 months waiting to hear the "See you in 1 year" but instead we heard, she will have to have another surgery. My heart sank. She will be older and know what is going on! We go back in December, thankfully after Christmas, to find out when. All of her ECHO information has been sent to her surgeon at MUSC (who is the BEST) and he will decide whether it will be in the summer of 2012 or sometime later then that! Until then we will keep praying for her and our other heart friends!

Check This Out!

2011-07-23T03:41:00.000-07:00

Have you ever been to Baby Be Blessed? They have the cutest dolls that have a scripture sewn onto them. Just check out Baby Be Blessed and enter their giveaway!

Some Cardiology News

2011-07-02T18:28:00.000-07:00

On Tuesday, Lorelei made our 6 month trek to Columbia to see Dr. Shuler her Pediatric Cardiologist. She was super good, she let them take her blood pressures in her arm and leg without a problem, get her weight and height and let Dr. Shuler listen to her, and after each thing she asked for a sticker. It was super funny!
Then it was time for the ECHO. She was SO good, even the sonographer said she couldn't believe she was 3 because of how well she was cooperating. We didn't even have a toy! It took an awful long time but she wanted to get the best pics she could since this was her first time seeing Lo and didn't really know her heart.
So then the moment of truth when Dr. Shuler walked in. He said her valve is growing right along with her and everything looked the same and then he dropped the bomb. She will have to have another open heart surgery to remove some tissue that has grown back. He said he noticed it about a year and a half ago but it hasn't grown since then. He feels that is would not benefit her to have that her whole life.
So the plan is to send her pictures and report down to Dr. Bradley, her surgeon, at MUSC in Charleston and see what he has to say. We will go back to see Dr. Shuler in December and see what the plan is and I will let you know what happens.

Our trip to NY

2011-07-01T05:02:00.000-07:00

We went to NY for the week and Uncle Tommy and Grammie bought Lorelei a water gun. She was having a TON of fun getting everyone else wet but would NOT want anyone to shoot her. It was pretty funny!

We also visited some playgrounds with our cousins.

We went to Grampa Don's land and sat on the tractor.

And rode the golf cart around the land.

I got to see my Grandma, Lorelei's Great-Grandma Charlotte. She will be 90 at the end of the month! Doesn't she look great!

We also met up with some friends I haven't seen in years and their kids and went to the splash pad. We had lunch and played in the water!

She wasn't too sure about the water because it would come up at different times but by the end she played a lot!

Lorelei and Grandpa Don!

She was a little tuckered out after running around with her new friends at the water park. This is how I found her. :o)

We talked seriously with cousin Jack while getting ice cream!

Jack and my sister Jeannette.

We looked at our new cousin, Delaney.

Grammy made forts with cushions.

We played around Grammy and Papa's pool. It was WAY too cold to go in, I am not sure why John is in there!

We played with Jack and new friend, DJ. He is my very first friend's child.

Beth and Jill, yes they are twins, are my very first friends. They are 6 days younger then me and my dad drove their mom to the hospital when they were born.

We ran off all of our ice cream.

Lorelei, Easter and other fun stuff

2011-04-24T10:22:00.000-07:00

Happy Easter everyone! We have a tremendous gift given to us today, yes the Lord has Risen, but we have Lorelei! Three years ago today, Dr. Bradley gave Lo a second chance at life. She had her first open heart surgery at just 6 days old! We knew she was a fighter when she was breathing over her breathing tube and ready to go home sooner then later. I am glad to be able to celebrate her today too!

Speaking of the little miss, she has been sick all weekend. We had fun plans for the entire weekend, like dyeing easter eggs, birthday parties, egg hunt and brunch but she has a form a strep and then had a rash over her entire body (might be from antibiotic but more then likely from the virus itself but we changed antibiotics just in case)

She has had a very busy week though. She had her cousins visit last Friday night as they stopped at my mom's on the way to Florida. John's parents also came in that night and stayed the entire week. She loves her Grammy and Papa. Then on Saturday, she had her 3rd birthday party at a Gymnastics Center here in town. She had SO much fun! We also went to the Zoo on Tuesday and she wanted to feed every animal she saw but we did feed the giraffes and goats. She rode the pony and I rode the train with her. Grammy got on the Carousel with her too! She loves to go on the Carousel.

Here are some pics from the week hope you enjoy!

Hope for BraveHEARTS Cookbooks!

2011-04-14T11:18:00.000-07:00

Hey everyone, the cookbooks ARE HERE! They are $12 a piece. I will post a pic soon after I get some on Saturday. Please let me know if you want one and how many! It's a really GREAT cookbook. I will also be updating the blog soon because Lo is having her 3rd birthday party this weekend. I cannot believe she will be 3 on Monday! Plus, her Grammy and Papa and her cousin Jack Jack will be in town so I can't wait for the fun that will be had! Keep watching!

A Little Catch Up!

2011-03-18T11:42:00.001-07:00

Yesterday we joined some friends at the Zoo! We saw the gorilla who didn't really care that we were there.

The kids were so happy to be there. We were on our way to the carousel. She loved that so much.

The three muskateers watching the Elephants.

This past weekend we went to the beach to visit John's uncle and aunt. Lo wasn't feeling so well so she napped with Daddy for a bit.

We found a bunch of shells!

She got her face painted.

We rode the ponies! She LOVED this, I hope she's not going to want a pony when she gets a little older.

We have been trying to get ready for spring! Lo helped Daddy plant some flowers.

We do crazy acrobatics on the chair (and scare Mommy half to death).

We went to the zoo back in January and this is Lo and E watching the shark swim around. They did this for EVER! It was so funny!

So we've been pretty busy as you can tell. In a month, my baby girl will be 3! Can you believe it?? I am trying to plan a Tinkerbell party for by birthday girl! It's going to be so much fun! I will be updating later!

Random Thoughts

2011-03-01T20:53:00.000-08:00

First off, the Hope for BraveHEARTS cookbooks have been ordered and are being processed as we well, as I write! We are taking pre-orders, the cookbooks are $12 a piece and contain a fun variety of 200 recipes! Leave me a comment if you would like to buy one and I will get in touch with you about how to get them. (We are supposed to have a PayPal button on the Hope for BraveHEARTS website soon!)

Secondly, I have been completely amazed at how God just places Heart Families into my life. During the month of Feburary for CHD Awareness and Heart Month, I received several new friend requests from Heart Moms and CHD survivors. I am so humbled by this. It is so nice to see a community come together like this! Also, Lo and I went to her first ever friend's birthday party for a little girl in her class on Sunday. I was talking to the girl's mom and she asked if Lo had a scar on her chest. I said yes, she has had 2 open heart surgeries and guess what her nephew (who was at the party) was born with TGA! I met his parents and now I have a new heart family friend! It is so funny how I meet Heart Families!

I am so grateful to have all of these wonderful people in my life. I am so glad that I no longer feel alone in the heart community. When we were first diagnosed we didn't know what to do but I think I may have found my calling. :O)

Last thing, I had to go to the dentist today for a toothache and now it hurts like the dickens and ibuprofen and tylenol #3 aren't cutting it, any other suggestions? I get it pulled next week because I AM NOT going through another root canal, after my last one I had lock jaw for a month!
Have a great week!

My Heart Mom Friends that I am SO Blessed to have!

2011-02-18T10:54:00.000-08:00

I got this idea from talking with one of my heart mom friends, Rhonda the other day so....Here goes:

When we were in the hospital in Columbia, we didn't know of anyone who had a child with a Congenital Heart Defect. Then we go to MUSC and meet some families who have children in PCICU. We met Sierra and Brent, whose son Montgomery was next to Lo in PCICU and Stacey and Jason, whose son RJ was also next to Lo in PCICU.

Then, while we were still at MUSC, Rebecca came into our lives. She was from the same town we live and she started Annabelle Baskets after her daughter, Annabelle, passed away from a CHD. Rebecca and her family have been great to us and I am so glad to call her my friend!

We got involved with Palmetto Hearts while at MUSC and met some great people through them too! Sara (founder of PH), whose son, Kaden, has a CHD became one of Lo's first heart friends. We also met Wendy and Jeff (Luci) through PH's family program that puts you with another family that has the same or a similar defect. We love Miss Luci! When we went to the first Heart Walk after Lo was born we met Abbie (Elijah) and Rhonda (Zeb) who have become great friends as well. When I first saw Rhonda at the Heart Walk I instantly felt like I knew her.

I met Mandy when she came into the pharmacy where I work and got a prescription for Evie. I couldn't believe that He was showing me families that I needed to be friends with. I was so happy to be finding all of these people who I could talk to, who had similar experiences.

Shannon, I have known for a long time. We used to work together then she moved to VA with her husband so he could finish up school and then when I found out she and Justin were having a child with a CHD I had to get in touch with her. Derrick is the cutest little thing there ever was and I am so happy to be a part of their lives.

Shannon, Abbie, Rhonda, Elizabeth (an adult CHD survivor) and I have started Hope for BraveHEARTS so that we could help fund research to help other families in our situation and maybe someday there will be a cure!!!! I know that we are here for any other family that needs to vent, needs advice or just needs someone to listen. We all are a family, a CHD family!

I have also read some blogs and continue to read blogs so that I can connect to other families out there who are CHD survivors and parents of CHD Warriors and Angels. Just this month I have connected to several people on facebook that are a part of the CHD family!

I have also met several Mom's and Survivors on Facebook and through reading other blogs. I am looking forward to get to know them better too!

I am also glad that Lorelei will have some friends who have been through what she has been through so she won't ever feel alone in the CHD world. It's awesome that we have all met and can talk and appreciate what we have all been through, some of us worse then others. When we first had Lo, I don't know about John, but I know I felt so alone and didn't know where to turn. I now know many Momma's and Daddy's that I can turn to in a minute if I needed them! I am Blessed to call them my Friends!

How CHD has affected my relationships.

2011-02-18T07:33:00.000-08:00

This is coming from a Blog Event over at Stefanie's blog.
She asked her readers this question and so I think I need to respond to it!

My relationship with my husband, John, has grown in ways I never new were possible. When Lorelei was flown to MUSC that Sunday night, I knew that this was a make it or break it point in our marriage and we talked about it, since we couldn't sleep. He held me as I cried for hours about Lo. We struggle day to day like all couples but we agree to do what's best for Lo and our marriage. We try to communicate with each other and of course sometimes it's hard. We knew that this would be hard on us and we agreed to go with it and you know what, it has made us stronger as a couple and as parents. Of course, we argue I am a fly off the handle kind of girl but he has the patience and yes sometimes its an all out screaming fest but we ALWAYS work it out.

My relationship with my family, well that might be a different story. Everyone came together when Lorelei's diagnosis was made and I became tremendously closer to my in-laws. My sister, JD, couldn't come down from NY to be here with us but helped us by giving updates to friends and family up there and even collected money for us. She had just had a healthy baby boy so she was worried and tried to help as best as she could. Others in my family were there for us too but now some still don't get how serious it is. Lorelei has had 2 surgeries and there is always a possibility of another.

Friends, that is a hard one. I knew some people would not be there down the road, especially when I called one of my good friends when we got her diagnosis and she didn't even ask us how we were, she started talking about another friend who just had a baby! I was so furious and haven't spoken to her since. However, I have seen people I grew up with be there for me and those friends who I hadn't spoken too in a long time I have become close with again! I am also blessed to have met many Heart Moms that I get to call my friends (stay tuned for another post about them).

God, I have found Him. Before Lorelei, I believed in Him but didn't live it. I have now seen what He can do and I have become Catholic. I know I swore that I would never do it and not many people know that I have changed. I feel that John and I needed to be on the same page with this since He has a plan for my Lo, I just know it!

My relationship with myself has been a struggle. I keep asking myself what I did that made Lo's heart the way it is and I feel like it's my fault but I am getting better about this. I am starting to lean on the Lord and know that this was His plan all along! I was even jealous of my sister and my friends that have had children for having a healthy, "normal" babies, but I now know that life is too short and too enjoy my "normal" to me child.

John and I treat Lorelei like she is any other child. She gets punished when she does something wrong, she can do whatever she wants to do, within reason! She knows when she needs to stop and rest. We talk about her "zipper" and when she understands a little better we will always tell her the truth and treat her like she is normal, which she is to us!

CHD Magnets

2011-01-29T10:43:00.000-08:00

I have some car magnets for sale. They are $5 a piece and you can show your support for CHDs! Let me know if you want one!

Please check this out!

2011-01-29T03:25:00.000-08:00

Hey everyone! Please check out www.fabulousfridayfreebies.blogspot.com
for a wonderful giveaway to help our dear friend Rebecca's beautiful ministry in honor of her daughter Annabelle. Lorelei was the first to receive an Annabelle Basket and we LOVE this ministry and the family behind it! Please check it out and support a GREAT cause!

Hope for BraveHEARTS 2nd Annual Pancake Breakfast

2011-01-16T05:56:00.001-08:00

On Saturday, February 5, Hope for BraveHEARTS will be having our 2nd Annual Pancake Breakfast! Please come out to the Fatz in Irmo to support a great cause. Tickets are $7 a piece for pancakes, sausage and fruit! And of course you will have fun servers, myself included! Please contact me if you would like tickets!

Snow AND Lo's first ever haircut!

2011-01-16T05:46:00.001-08:00

On Monday, we woke up to this! SNOW! It was beautiful until it started freezing rain, then it wasn't so fun anymore!

Lorelei had a blast in the snow with Lola. We were snowed/iced in for 2 days and then on Wednesday when it all started to melt Lorelei and I went to get her very first "real" haircut. I took some advice from a friend and went to Sharkey's cuts for kids in Lexington.

She did pretty well for sitting still. She picked the Barbie Jeep, of course. When it was all said and done, she got about 3 inches cut off the back and then got her nails done! She sat there like a pro, she knew just what to do! It must be in grained in the X chromosome! She was so cute. She was happy that she got a balloon AND a sucker.

Hope for BraveHEARTS

2011-01-09T07:54:00.001-08:00

Hey everyone, hop on over to the Hope for BraveHEARTS website to see what we plan on doing for CHD Awareness week. (A t-shirt design contest) We are still collecting recipes for our cookbook until Jan 31! Please send some in we are really excited about this! We have some really fun things planned for this year so be looking out for what we are doing. If you are in the Columbia area and what to support us AND get some good breakfast we are having a Pancake Breakfast at Fatz in Irmo on February 5. Tickets are $7 a piece and we are there to serve you :O) Please contact me for tickets!

Keep on reading because I just wrote a pretty long post about the fun we had in December.

So much to catch up on!

2011-01-09T07:23:00.001-08:00

On Christmas day, we went to my sister's house for dinner and in the morning. Jack and Lorelei tried to play nicely.

Lorelei sporting her new dress that Papa bought for her.
My Dad (Grampa) bought her her first bike. She is VERY excited about it!

Santa Claus came to Grammy and Papa's house.

Lorelei used Grammy's snowman broom to clean before Santa came and she put out cookies and milk for him, but was very upset Christmas morning to see that he had ate the cookies and drank the milk.

"I just cleaning, Mommy, I just cleaning."

We played in the snow with Grammy, Daddy and Max (the dog).

Once she realized she could throw the snow at people, she had TONS of fun!

Christmas Eve we went to my Dad's for lunch and to hang out for a while. It was interesting to try to get a picture of Jack and Lorelei together!

Shrimp, shrimp dip, chips and dip, cheese and crackers, what a fun lunch!

Lorelei colors with Uncle Tommy!

On December 18th, Hope for BraveHEARTS handed out Christmas presents to the kids/patients on PCICU and 8D (the new floor which is gorgeous! it used to be 7C). We also teamed up with Texas Roadhouse and served dinner to the families staying at the Ronald McDonald House.

Elijah was our BraveHEART Helper

Shannon giving Dr. Graham the donation for RESEARCH!!!!!!!

Lorelei also had her first taste of Hot Chocolate, since December was a VERY cold month in SC.

She got to use her Pillsbury Doughboy cup from Grampa Don. She LOVED it!

Santa Claus came early to SC since we were going to NY for Christmas. He had to do a test run before the real deal to make sure the reindeer were in working order.

Lorelei also went to see Dr. Shuler in December. She did really well this time and she showed me how much she has grown up. She let the nurse take her blood pressure and she laid still for the ECHO. Dr. Shuler says she looks good and her ECHO was great and we got another see you in 6 months. We will go back in June. I LOVE good reports!

Mason

2010-12-10T15:48:00.000-08:00

One of our heart friends has been flown to MUSC in distress and he is in surgery right now. Please pray for his family as these are trying times. I have met Mr. Mason and he is an adorable little guy! Check out his blog to the right and see the updates.

Thanksgiving!

2010-11-28T04:03:00.000-08:00

John, Lorelei and I went to my mom's house for Thanksgiving dinner. We had a great time with Memaw, TJ, Cody, Amanda, Uncle Walt, Chris, Rachelle and Sophie. We sure missed Aunt Jan, Uncle Mark, Aunt Jeannette, Uncle Marc, Lexi and Jack!

Lorelei sat with Memaw, ate goldfish and watched the parade.

Lo also sat with Daddy and watched Mickey Mouse.

Lorelei also watched the guys play catch and then wanted in the action. She played ball with Memaw and Chris and mom's dog, Opie. She was so patient in waiting for the ball to be thrown to her. She also played with Sophie. They had a great time and fun was had by all!

Just a Quick Update

2010-11-24T07:54:00.000-08:00

Stay tuned for Thanksgiving pictures after tomorrow. We are getting ready to go to my mom's for Turkey Day and then we will be headed to Auburn for Christmas. We have much planned and we are very excited for the holidays. We plan on visiting Harmon's Tree Farm, seeing Santa with some good friends, serving dinner at the Ronald McDonald House, having a small Christmas here before we go to NY (Lo is still little and really doesn't know what's going on so its a little easier) and spending time together. I hope there is snow in NY for Christmas, at least while we are there and not on the way there or back! What are your plans for the holidays??

Birthdays and Anniversaries for October, November and December

2010-11-24T07:45:00.001-08:00

Since I forgot 2 months of Birthdays and Anniversaries I figured I would do those PLUS get a head start and do December as well!
Happy Birthday to:
Jessica Wilson (John's cousin)
Amy Wilson (John's cousin's wife)
Michael Wilson (John's cousin)
Ellen Wilson (John's aunt)
William Rhinehart (John's cousin's son)
Joann Friedel (John's aunt)
Jamie Howard (John's cousin)
Gabriella Garuccio (John's cousin's daughter)
Margaret Vasco (John's aunt)
Joan Wilson (John's aunt)
Tim Wilson (John's uncle)
Peter Edwards (my uncle)
Deanna Jenkins (John's cousin)
John Hanson (John's cousin's husband)
Benjamin DeMatteo (John's cousin's son)
Elias DeMatteo (John's cousin's son)
AJ Porfirio
Mike Rhinehart (John's cousin's husband)
Peter Wilson (John's uncle)
Ray Paseika (John's cousin's husband)
Jamie Wilson (John's cousin)
Scott Wilson (John's cousin)
Brian Hollis
Abigail Hendricks (John's cousin's daughter)
David Loysen (my cousin)
Sara DeMatteo (John's cousin)
Max Rietmann (my cousin's husband)
Jake DeMatteo (John's cousin's husband)

Happy Anniversary to:
Mike and Melanie Rhinehart
Kevin and Kim Friedel
Tom and Cindy Hendricks
Cathy and Ernie Howard
Rick and Lisa Wilson

Some Special Happy Birthday's go to:
my nephew Jack :O) He turned 3 on Nov 9!
my mom, Pat
my mother in law, Jeanne
and my sister Jeannette!

A ton of stuff to update on!

2010-11-07T13:02:00.001-08:00

Yesterday we went to FunZone with our friends to play and what does Lorelei do? She gets in the exersaucer! Silly girl! She did not want anything to do with the Bounce Houses or bouncy things, in fact she wouldn't even go in the room!

Too bad Daddy and GodFather Uncle Kevin weren't here to play a game of b-ball with Lo!

She did jump on this thing though!

We were a firefighter for a little while too!

Cheese!

Here are some pictures from Halloween. Lo was Minnie Mouse and she loved it! We went trunk or treating at the church across the street from our house. She rode the entire way in her stroller. We had to start out saying trick or treat for her and then about half way through she started just sticking out her hand and when we were almost finished she started saying trick or treat and opening her bag and then saying Thank You!

Even Lola got to be Minnie Mouse for a little bit. Poor thing, Lo likes to terrorize her.

She is in constant motion any more and it is VERY hard to get a good picture of her.

This is what happens when you give a 2 and 1/2 year old a chocolate cupcake with chocolate icing. Then you dump her in the bath!

I cannot believe she will be 3 in April! She is starting to talk so much more and you can actually have a conversation with her, in a 2 year old way. She knows a lot and loves the ABC song and singing and dancing. We read a lot and still LOVE Mickey Mouse.

We are getting ready for the holidays here and have gotten out the dancing snowman and have bought 2 singing Santa Mickeys'. We are doing a small Thanksgiving for us next weekend so there will definitely be pictures of that and then December and Christmas fun! We will be in NY this year and we are really hoping that it snows.

Our breakfast went really well and we are still selling t-shirts if anyone wants one. Hope for BraveHEARTS will be doing some fun Christmas stuff so please check back for more info! Please keep one of our board members in your prayers, she is an adult CHD survivor and is in need of a heart transplant. She is trying to be bumped up on the list, as she has had 2 strokes in the past few weeks and was rehospitalized 2 days ago.

I will be updating later in the week of October/November Birthdays and Anniversaries as I forgot to do them last month. I will also post pics of the projects I have made for the holidays but I am not putting names by what because I don't want people to know what they are getting!

Have a great week everyone!

Baby Be Blessed

2010-11-06T05:05:00.000-07:00

Y'all please check out babybeblessed.blogspot.com, they make adorable dolls!

Fun Zone with Heart Families

2010-10-23T12:55:00.000-07:00

Heart Families,

Hope for BraveHEARTS invites you to join us for some fun!

What: Bouncing, climbing, sliding fun at Funzone in Irmo, SC

When: Saturday, November 6, 2010 from 1:30-3:00 pm

Cost: $6 per child

Refreshments will be provided free for everyone. Don’t forget socks for each child that will be playing

We hope you will come meet new and old heart families while the kids have lots of fun bouncing around and making new friends.

Autumn

2010-10-03T03:12:00.000-07:00

Fall has got to be one of my most favorite seasons (it brings us to Christmas, which is my ABSOLUTE favorite time of the year, but after that the winter can just go away!) I love the crispness of the air, the leaves changing color, the plentiful apples and pumpkins. In NY, we would go apple picking but down in SC there is not very many apple farms but there are places to go in the fall to get pumpkins and such.

I think my favorite part of the fall is being able to make more hearty meals for my family and the smells of "fall foods" as I call them. John is made chili and we are roasted a chicken with potatoes yesterday for Sunday dinner. Some of my favorite things to make in the fall are anything with pumpkin or apples, meatloaf (yes I like meatloaf), sweet potato casserole, soups, stews, beef stroganoff, I can go on and on. I love whoever made the slow cooker too! I was reading my friend Mandi's blog (Seventh Smith) and she wanted us to post a favorite fall recipe sooooo here goes:

Apple Sauce
*as many MacIntosh apples as you want, peeled, cored and chopped
*1/2 cup water

Place apples and water in saucepan cover and put on medium-low until apples have broken down. Stir occasionally.

It is my mom's recipe and I know it is not anything fancy but it brings me back to my childhood and fall and it is delicious. There is nothing like homemade applesauce, well unless its my mom's apple pie!

HAPPY FALL Y'ALL!

Update on Hope for BraveHEARTs

2010-09-29T16:58:00.000-07:00

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

2010-09-26T12:35:00.000-07:00

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

2010-09-23T17:40:00.000-07:00

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

2010-09-21T03:22:00.000-07:00

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

2010-09-19T05:14:00.000-07:00

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

2010-09-10T12:24:00.000-07:00

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

2010-09-10T12:16:00.000-07:00

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

2010-09-10T12:08:00.003-07:00

She wants it to get cooler just like I do!

Another meaning of my child is blue...

2010-09-10T12:03:00.003-07:00

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

2010-09-10T11:59:00.000-07:00

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

2010-09-10T11:43:00.000-07:00

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

2010-09-10T11:31:00.000-07:00

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

2010-09-05T04:43:00.000-07:00

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)~!

Cousins

2010-08-22T13:35:00.001-07:00

I got Jack and Lorelei matching shirts. Don't they look cute? They had so much fun together.

This is the second generation of Edwards family cousins. Left to right... Lo, Jack holding Manon and Vianney.

Wyoming

2010-08-22T13:13:00.000-07:00

We went to Wyoming for my cousin's wedding. It was really fun and the pictures from the first half of the weekend were deleted by Lo but my sister said she would send me her pics so that will be another post. It was Lorelei's first time on an airplane. She LOVED it. We flew out of Charlotte, we (my mom, TJ, Aunt Jan and Uncle Mark) met up with Aunt Jeannette and Jack in Charlotte and flew to Minneapolis then to Jackson Hole. It is beautiful out there. We saw buffalo.
We took pictures while driving.

We played on the playground!

We went to the top of a mountain!

Lorelei didn't care that we were up 10,000 feet, she just liked the horse on the fence.

We were only up there for a few minutes because a storm was rolling in.

Uncle Mark helped push Lorelei up the mountain.

We were at the "Top of the World."

This was the sunrise the morning we left.

She was tuckered out. This is how she fell asleep, sitting up on the airplane.

Just so you know....

2010-08-01T06:44:00.000-07:00

I have posted several stories about our recent adventures and more will be coming since on Thursday we are flying to Wyoming for my cousin's wedding. It will be Lo's first time on a plane so it will definitely be an adventure. Then when we get back from Wyoming, John's parents are coming to visit again! We are excited so please read up on what we've been doing and keep looking for more posts about Wyoming!

Fun with Friends

2010-08-01T06:28:00.000-07:00

Yesterday we went to Saluda Shoals Park to the Splash Pad with some Heart Friends. Lorelei was not sure at ALL about it.

Ok, maybe I'll go.
Tristan, Britain, Izzy and Elijah enjoying the water.
D was having tons of fun!

Still very unsure.
Evie loving the shower!

Abi, Izzy, Evie, Elijah, Lo and Derrick playing. Derrick is asking Lo "How you doin?"

Lo and Evie giving hugs.
She is constantly in motion!

Evie dancing.
We got rained out of the Splash Pad, it started thundering and they shut the water off so we decided to go back to Shannon and Justin's to eat and play.
Evie waiting patiently as Lo and Izzy eat. The kids were starving!

Sweet Britain.
This was the best picture of all 4 of the Heart Babes but we are missing one who is up above looking down. They are all so sweet! We had a ton of fun but we really missed Rhonda, Sonny, Zeb, Preslee and Kerrigan. They couldn't come because Zeb was sick.

Thursday and Friday to and in NY

2010-08-01T06:14:00.001-07:00

Jack and Lo with their chocolate, vanilla twist with rainbow sprinkles!
Watching the birdies at Aunt Jeannette's house.
Yum, ice cream!
Let's see if we can push this big rock!
Climbing!

Thursday morning we left at 3:30am for NY. John turned on the DVD player in the car for Lo and you would have thought Daddy was her hero the way she went on and on about it in the car. (We don't use it in the car that much.) I also got a speeding ticket in Virginia, but we finally got there around 5. The whole 14 hour trip I listened to Mickey Mouse, Dora, Diego and then some. Lo also sang ABC's and Twinkle, Twinkle Little Star ALOT! When we got to John's parents house we had PIZZA, I MISS NY pizza. It was soooooo good! Then we met up with my sister, Jack and Lexi to go get some ice cream from the same place that we went to get ice cream in the summer when we were little. It was so much fun!

I don't have any pics of Friday but Lo, Grammy and I went shopping then went to visit Grandpa and then we went out to eat with some good friends. Beth and Jill are identical twins that I have know since they were born. We were born 6 days apart and my dad brought their mom to the hospital when they were born. We grew up together and it was nice to get together and talk. We were hoping our other friend Julie would meet us but she wasn't able to come. We were able to go see her after dinner. Her son passed away 2 months ago and it was nice to be there for her since I couldn't when he passed.
It is so nice knowing that your friends are there whenever you need them. We know we will always be friends and I love that you can not really talk for a while and then when you get together its like no time passed whatsoever!
I think we even decided that the year we all turn 40 we are going to do it up! We have 7 years to plan it so it should be good!

Wilson Pig Roast (Saturday)

2010-08-01T06:06:00.000-07:00

Every year, John's Uncle has a pig roast for family and friends. John's mom is one of 10 and most of her brothers and sisters were there and this was the first time for some of them to meet Lorelei. They had fun things for the kids like the big water slide and a pool. Yes we brought Lo's swim suit but she was ready to go in her clothes, so we let her. It was VERY humid and hot out.

She thought the rings for the pool were swimmies.

I like to slide.
And ride!

Monday and Tuesday

2010-08-01T05:26:00.000-07:00

We left NY on Monday and stayed overnight at a hotel. Lo did great again in the car and at the hotel although she really thought the phone was hungry!

John

2010-07-30T03:52:00.000-07:00

HAPPY BIRTHDAY JOHN! I am so glad that you are my husband and I love you more and more each day! I love you! I hope you have a good day!

We are going to be busy

2010-07-18T04:59:00.000-07:00

These next 3 weeks are going to be a whirlwind of fun for our family. On Thursday we are headed to NY where we are going to be catching up with old friends, going to a family reunion and celebrating my Grandmother's 89th birthday! The weekend we come home we will be having a fun play date with some Heart Friends. Then Lo and I are headed to Wyoming for my cousin's wedding. We will be together with my cousins with all the kiddos for the first time. Its going to be so much fun. Be on the watch for LOTS of pictures.

Hope For BraveHEARTS

2010-07-06T12:45:00.000-07:00

Introducing a new partnership between Shannon Carter and I and some Heart Moms, Dads and CHD survivors.......Hope For BraveHEARTS! We are in the process of starting this NonProfit Organization to help raise funds for the Research Program at MUSC and bring awareness of CHD's to the forefront! We are very excited about this new venture. We are incorporating our BraveHEART Baskets in this venture! Please pray for our guidance while we get this started! I will keep you informed about our progress!

Palmetto Hearts Golf Tournament

2010-07-06T12:43:00.000-07:00

It's that time of year again.....the Palmetto Hearts Golf Tournament. It is Tuesday, August 17th at Mid Carolina Country Club. Please email me at jessaro77@yahoo.com for information!

What have I been up to?

2010-07-06T12:42:00.001-07:00

I have been a knitting fool! I have created many a Snuggli (little knitted lovies) for cousins and new babies. I love creating for people, its been so fun!

CHD Magnets

2010-07-06T12:40:00.000-07:00

I have some CHD car magnets for sale. They are $5 a piece, just email me at jessaro77@yahoo.com to let me know how many you want and how to get them from me. Thanks! I am having issues with pictures right now but when I can get them up I will post one!

Birthdays and Anniversaries

2010-07-06T12:34:00.001-07:00

It's July and we all know what that means...
Picnics, fireworks and fun!

I would like to wish a very Happy Birthday to:
Juliane Pasieka (John's cousin)
Tommy Hendricks (John's cousin's husband)
Liz Cioppa (john's aunt)
Missy Wilson (John's cousin's wife)
Walter Roggero (my cousin's fiance)
Cindy Hendricks (John's cousin)
My Grandma Charlotte
My friend Nicole Clare
Cathy Howard (John's aunt)
Al Snyder (John's cousins fiance)
Naomi DeMatteo (John's cousins daughter)
Charlie Wilson (John's cousin's son)
My Great Aunt Trudy

and a VERY Happy Birthday to my husband John!

Happy Anniversary to:
John and Jewel Hanson (John's cousin and husband)
and
Jan and Mark Baraczek (My sister and brother in law)

We are going to be busy this month, we are going up to NY for a Wilson Family Reunion (John's Mom's side of the family) then we will be home for a few days and we will have a play date with some Heart Friends and then we will be flying to Wyoming for my cousin's wedding. It's going to be fun!
We hope everyone had a Happy and Safe Fourth of July!

Happy Father"s Day!

2010-06-20T07:29:00.000-07:00

Today I want to say Happy Father's Day to John! He's been such a great dad to Lorelei and I love watching them interact. She loves her Daddy so much! Today we are just going to relax and have a quiet day, that's what he wanted.

I also want to say Happy Father's Day to my Dad and John's Dad otherwise known as Grandpa and Papa!

Happy Father's Day to all of our friends and Heart Dads!