Miracle Network Radiothon

The K95 Cares for Kids Radiothon is underway! The radio station is broadcasting live from the St. Francis Children's Hospital in efforts to raise money to bring more specialized care to the Tulsa area. Families have been invited to share their medical stories on air with hopes that someone will be touched and donate.

Claira's story will be aired on Wednesday, July 23rd sometime around 2:00 or 2:30 pm Central time. If you are not local, you can listen online. Visit K95FM.com then click the LISTEN LIVE! link to connect to their online radio streaming. Thank you for always taking an interest in Claira and our family. We hope to use our experiences to help other families in the future.

Welcome Home Bailey!

Not long ago, another "Mended Little Heart" came into our lives. Bailey was born with 2 hearts defects that were painfully similar to Claira's. Jenny and Brandon (Bailey's precious parents) and I met at a recent MLH support meeting. We exchanged phone #s and discussed the similarities at length. Bailey was beginning to show signs of a slowing appetite and Jenny worried she might have to go through the same eating difficulties as Claira. Gratefully, Bailey's cardiologist chose to hurry things along ... s0 at almost 3 months of age, Bailey's heart was repaired on June 27, 2008. Mom reports she is doing fantastic and is making up for lost time! Way to go Bailey! And kudos to Mom and Dad (Jenny and Brandon). We certainly know what a ride this has been for you guys.

It seems somewhat unfair for Claira to have had such a difficult time, and I've found myself asking what I did wrong. The answer is nothing. Prayers were said and prayers were answered. Perhaps God's will was for one family to experience and learn only to help another family in turn. In this way ... Claira's Journey is complete.

Visit Bailey's blog "The Beauty of Bailey" for more info on her heart journey.
http://baileysbeautifulheart.blogspot.com

Paying it Forward

Saturday I had the opportunity to travel to OKC to visit Manning and his family at the PICU in the Children's Hospital. Not long ago, 9-month old Manning was admitted to the PICU due to complications from a heart cath that was to determine the date of his second open-heart surgery, the Glenn. During the procedure an artery was punctured which led to a series of complications (for more information click on the "Manning" link on the side bar). It is also important to know that Manning's grandfather passed away the day before this began. For nearly 7 weeks, Manning's Mom and family have been rotating shifts at the hospital to ensure there is always a loved one at his side. Manning's parents live more than 2 hours from the hospital, and since Mom drives 45 minutes a day to work it is almost impossible for her to be with him daily. The insurance that is paying for Manning's care is provided by Mom's employment, so there are few options. Susan (MLH of Tulsa Coordinator) and I brought gas cards, cash for tolls, snacks, restaurant gifts cards, a soothing cd, and toys for Manning and big brother ... all donated by friends and members of Mended Little Hearts.
Manning's Mom was overwhelmed and worried she couldn't thank us enough. We both understood how she felt and told her the same thing everyone told me last year ... everyone knows we are in need and no thanks is necessary. I realized our experience with Claira last year has almost come full circle. I am now in a position to give back the support we received last year by supporting other families who are now struggling.
After our visit we met Brayden and his family. Brayden was born with Hypoplastic Left Heart Syndrome and had his first surgery at 5 days of age. He, however, has many other struggles with his new little body (for more information click on the "Brayden" link on the side bar). Brayden is blessed to have 2 very attentive and intelligent parents who are facing this challenge with a positive attitude.
I know both families would appreciate continued prayers on Manning and Brayden's behalf. These "heart babies" are very brave, and I believe they have much to teach us.

Another walk to remember . . .

We had a great time ... again! This time we were actually on time (I know, I know hard to believe for our family.)

We first met the other "Mended Little Hearts" at the Survivor tent, where Claira was given a red heart to identify her as a survivor (Mom got one too, because ... well, I was Mom!).

Alot of the kiddos there had repaired hearts, just like Claira. A few still were waiting for more procedures and even additional surgeries, like Ethan who is expected to have his third (and hopefully final) surgery next month.

It was so amazing to feel the support and understanding from so many different people. Many of the people there were simply trying to make a new, healthy start.

We wore our shirts with pride and made signs to let everyone know who we were walking for. I have a challenge for all you friends and family out there ... we want to have a huge group of "little survivor" supporters next year for the 2009 Heart Walk! Oh, don't you worry ... I won't let you forget. It's great exercise too!

T-shirt Order Deadline

Many of you have already ordered and I'm thrilled! For those of you who are interested in a shirt, I will need your information by Thursday ... that's tomorrow folks. I'm sorry about the rush, unfortunately the Heart Walk is just around the corner and we need to give our printer time to make them. If any of you ever need shirts for a project or a team, I would highly recommend this company. Jamie, my contact, is donating the cost of printing ... which is what allows us to give so much to the American Heart Association. Thank you Jamie!

American Heart Association Heart Walk

It's time again for the annual AHA Heart Walk. Last year's walk (what I call a Walk to Remember) was a healing experience as our family was preparing for Claira's surgery. Kaylee and T.J. gave up an chance to compete with their band in a city-wide contest, so that they could walk with us. Many of you reached out to our family and came to walk, donated to the Heart Walk website or donated to AHA by purchasing t-shirts ("Bless Her Heart").
We plan to continue participating in this event as long as possible. While Claira is repaired and healthy, many other children struggle with numerous surgeries. I believe there will come a time, through research funded by organizations like AHA, when children like Clayton will require only one surgery because of medical advancements. The medical community has already achieved so much, but there is so much more to learn.
If you would like to help Claira reach her fundraising goal, you can go to her American Heart Association Donation page ... or you can choose to purchase a t-shirt for $10.00, and we will give the remainder to AHA. The shirts are pink with brown baseball sleeves ... the print, in sports style, reads "SURVIVOR" with "Team Claira" underneath. Last year we sold over 100 shirts, and was able to donate over $500.00! The staff at Roosa Elementary wore the shirts on the day of her surgery to show our family their support. If you would like to order a shirt, please E-mail your request to eastmanpartyof7@yahoo.com. (I need to place the order the first week of April).

Meet Clayton . . .

Clayton is a precious little guy that has already survived 2 major heart surgeries, with 1 more to go. He has Hypoplastic Left Heart Syndrome, where the left side of the heart (the hardest working part) is underdeveloped. Years ago this was a death sentence, but with medical advances this little guy is thriving and looks beautiful!

We met Clayton and his mother last week in Oklahoma City after our "photo op" with the Governor and other Mended Little Hearts members. In the brief time that we visited, I knew this family was special. Clayton has an older brother named Colin who was born with the same defect in 2004. He spent 7 1/2 months of his little life in the hospital, and went through 4 surgeries. Colin passed away at 8 months of age, as his little body couldn't recover from the many surgeries.

I have felt such a connection with Clayton's Mom; she too wants to someday become a nurse to help children such as ours. Clayton has a website, click here if you want to read more about this amazing family.