Christopher's Champion Induction ceremony

Wednesday, both of the kids had a very big day in store!
It started with a peds well check up appointment. It's always great to have those well check ups! :)) Both of the boys had a very good check up and Christopher even gained a pound! It's been ages since I could say that. It was a good visit. We then had some errands to run, picking up meds and a trip to the medical mall where we had lunch and killed time until a very very special event that afternoon.
I know many of you already have seen this announcement because we are facebook friends, but I would like to officially announce here to you... drumroll please.... The 2012 Mississippi Children's Miracle Network Hospitals Champion Ambassador, Christopher Pena!
This means an amazing year for our family, including a paid visit to Washington DC and Disney World with the other CMN ambassadors across the country. It also means lots of fun appearances at various hospital fundraisers and our chance to spread our message that God is still in the miracle buisness and the existance of Barth syndrome.

The induction event Wednesday was held at the Mississippi's children's museum, an absolute wonderland for children. Christopher, his brother and I arrived to his destination via the brand new children's hospital ambulance and police escorts, lights and all. We even ran into his NICU discharge nurse who was on the ambulance with us. Talk about a sweet reunion!
Upon arrival, Christopher walked down the red carpet and there were balloons everywhere and a big banner with his cute face on it! They had cupcakes and an adorable giant cupcake all in Christopher's honor. We spoke a few words and shared our story while Christopher itched to run and play. (if you've never visited, you are missing out on a great time with your children!) He even got his own " baseball cards" with his photo and personal hobbies and favorites on it to pass out!
There were cameras everywhere and interviews. He made the paper and there is a video interview with his story on the Clarion Ledger website. Here is the link if you would like to watch it :)
http://www.clarionledger.com/section/VIDEONETWORK?bctid=1618239690001
Also, here are some photos captured by Clarion Ledger from his special day
http://www.clarionledger.com/apps/pbcs.dll/gallery?Site=D0&Date=20120502&Category=NEWS&ArtNo=205020806&Ref=PH&Item=0
And a few by the hospital photographer
https://www.facebook.com/photo.php?fbid=10150847309589939&set=a.10150305704544939.367999.248843029938&type=1&theater#!/media/set/?set=a.426704744008152.105054.111945682150728&type=1
Here is his spot on the official Children's Miracle Network Hospitals website
http://childrensmiraclenetworkhospitals.org/About/Champions/MS
There is also more coverage to come. It was a very special day, both of the kids are still bouncing from excitement and our trip hasn't even begun yet! I would like to thank the staff for making Christopher feel as special as he is to us!
Speaking of staff, happy Nurses week! We have had so many touch our lives, a nurse is one special person. And we have connected with many who go above and beyond their calling and we have come to think of as family! Thank you all! We love the Blair E Batson hospital staff.

Christopher's Story

Christopher
Age 4
Batson Children’s Hospital
Barth Syndrome

With the world as his stage and his smile the main act, Christopher is the ultimate actor. His funny, sweet and outgoing personality has many only seeing a well little boy. However, offstage Christopher endures countless medical procedures to treat Barth syndrome, a rare genetic condition.

As the first child in Mississippi diagnosed with this ailment, Christopher continues to defy the odds. He has a lot of energy, but tires quickly because of his health setbacks. Yet this doesn’t get him down. Christopher loves horses and playing with his brother.

Even though he deals with neutropenia, muscle weakness, labored breathing, a poor appetite and slow weight gain, doctors have been awed by his progress. Despite his early struggles, Christopher has maintained an attitude that leaves his family and everyone around him applauding. You can follow his story and read more of his background at www.caringbridge.org/visit/cj08.

Children's Miracle Network Hospitals Champions

Champions is a Children's Miracle Network Hospitals program that brings attention to the important work being done at its 170 children’s hospitals. It does this by honoring 54 remarkable kids who have faced severe medical challenges, and helping them tell their stories.

The Champions program designates a child in every state who has bravely battled a serious injury or illness. The Champions represent the 17 million children treated at Children’s Miracle Network Hospitals every year. The 2012 Champions have dealt with a wide variety of injuries and illnesses including genetic diseases, organ transplants and traumas, as well as various types of cancer.

The Champions travel for a week in September, first to Washington, D.C., where they traditionally meet with their state representatives on Capitol Hill and visit the White House. They then take a private chartered flight, provided by Delta Air Lines, to Orlando, Fla. While there, Champions meet Children’s Miracle Network Hospitals corporate partners, hospital representatives and media partners. These groups convene to celebrate a year of medical miracles during the Children’s Miracle Network Hospitals Celebration event at Walt Disney World Resort.