Thursday, April 30, 2015

Nolan - Guest of Honor at Rockin' For Little Hearts 3

Recently my dad, (State Representative Garth Everett) was contact by Cindy Gradowski, Chair of the Children's Hospital of Pittsburgh Foundation for the  Heart Institute. Someone had shared a YouTube video of my dad the day he announced to the House of Representatives that Nolan received the gift of life. From one heart family to another, you are touched to hear each other stories and even more elated when there is success at the end of your adventure. With that said, Cindy asked our family if we would accept the offer of Nolan being the guest of honor at the third annual fundraising concert for the Children's Heart Institute. The concert is named "Rockin' for Little Hearts 3" and is featuring Bret Michaels! This is Bret's second Rockin' for Little Hearts concert, last years raising $110,000 for The Heart Institute at Children's Hospital of Pittsburgh. We are so incredibly honored for Nolan to represent CHP and The Heart Institute.

The first week when Nolan became sick was a whirlwind. There were so many quick decisions that had to be made. When we were at Hershey Children's Hospital, after 5 days the doctor's felt that Nolan needed to go to a children's institution where there were options available for a possible heart transplant. Our minds where swirling...transplant? I remembering hearing the doctors speaking...several words resonated...and then we had to answer a question. "Where would you like to send your son? We need to make the decision now." They gave Matt and I a moment, but we stopped one of the physician's who we felt a connection with at Hershey and asked him, "If this was your child, where would you send them?" And he told us that he really was not allowed to answer that question, but in essence of our situation and the immediate decisions that needed to be made, he solidly answered, "I would send my child to Pittsburgh." We immediately said to him...DONE.

And we were off to Pittsburgh.

Here's the wonderful part of deciding to go to Children's Hospital of Pittsburgh:
  1. Have I ever mentioned that Matt and I are Pittsburgh fans? Steelers? YES! The Buccos? YES! The Pens? YES!
  2. My best friend from college literally lives about 2 miles from CHP. Talk about fate.
  3. My best friend's mom worked at CHP while we were inpatient. I already knew she would make sure Matt and I were comfortable.
  4. While researching CHP on our drive there, I realized that this wasn't just a hospital for children, but they had a heart institute!
Our time at Pittsburgh was a success and we have a long, and hopefully, smooth road ahead of us. Nolan will continue to receive care through Children's Hospital of Pittsburgh throughout his childhood. Because of that I feel a responsibility to help support the Heart Institute at CHP, so I have decided to raise money to become a sponsor for the Rockin' For Little Heart 3 concert. My goal is to raise $1,000 and it coming from "Team Nolan." With that said, I am asking all of Nolan's followers, my family and friends to consider donating towards this amazing institute. The monies raised will help CHP continue to provide the most advanced, experienced and comprehensive cardiac care throughout Pennsylvania, West Virginia, Ohio, the greater East Coast Region and beyond...even internationally! I will be taking donations until Monday, June 1. ANYTHING COUNTS! Give a little, give a lot. :)

To donate, please visit:

I thank you in advance! LASTLY, I want to highlight that today is the last day of National Donate Life Month. Currently, nearly 124,000 men, women and children are awaiting organ transplants in the United States. Each day, an average of 79 people receive organ transplants. However, an average of 21 people die each day waiting for transplants that can't take place because of the shortage of donated organs. It's easy to sign up to be an organ donor - and I am about to make it easier for you. Click HERE and make a difference today. Become an organ donor. I found a comforting way how to understand organ donation:

"Donating an organ, whether through the wish of the person who has died, as a bereaved relative or as a living donor related to the recipient, is a unique example of the human capacity to love. Through organ donation, strangers suffering their separate sorrows of death and illness, share their sufferings and make to each other the gift of love and life."

Thank you ALL for your continued love and support. We appreciate it so much!

#nhos #rockinforlittlehearts3 #donatelife

Monday, April 6, 2015

National Donate Life Month

I think spring has finally sprung in Pennsylvania, thank God! The flu season is officially over, so we are slowly getting Nolan out of his bubble and back into the world. We had an amazing Easter weekend spent with our family and some friends. Last year we had just returned home from Pittsburgh, so we did not take Nolan anywhere. So this year was extra special getting to participate in Easter egg hunts and have the opportunity to be around friends and family. I know Riley appreciated it because she was SUPER excited and ready to hunt some eggs!

Nolan is doing great! Last week was busy having various appointments; one with our neurologist in Hershey, routine lab work and a visit with our primary care physician. Our neurologist is very happy with Nolan's development and catching up on those important milestones. We have also been exercising his right eye that is lazy by patching his strong (left) eye so the right eye can gain strength. We all feel improvement has been made. All his labs came back fine, so we don't have to go back for one month! At our primary care visit we started back on some immunizations he has not received yet. Nolan is only able to receive inactivated vaccines because there are concerns that a live virus vaccine may cause the vaccine associate disease due to his immunosuppression. With that said, he is unable to receive the MMR, which is terrifying. Measles can put a healthy person in the hospital, possibly even kill them - so the fear of Nolan being exposed makes me sick to my stomach. I am scared of the common cold!

Later this week Nolan will head back down to the Harrisburg area for a cardiology appointment. We will head back to Pittsburgh Wednesday, May 27. He has a day full of appointments on Thursday, May 28 and then his routine biopsy on the 29th. I think my parents will be joining us and on Sunday, May 31 we all are going to speak at a presentation with CORE: Center for Organ Recovery & Education. They are going to have a family from each part of the transplant experience speak...someone waiting for an organ, a family who donated a loved ones organs and us, a family who received an organ. I am excited for us to share our story and promote the importance of organ donation.

Speaking of organ donation, April is National Donate Life Month. I have always been an organ donor since the day I received my license - but never did it really MEAN anything to me. It just made SENSE to me. Now, this is our life. I think about our donor and their family every day. I wonder about how the family is doing. I wish everything in the world that I could explain from my side what they did for my family and let them know that we were grieving with them the same day they were when their little one passed away. I want them to know that we are taking AMAZING care of their son/daughter and that their heart is so strong! Nolan has the strength and endurance of any other 2 year old, thanks to this family's courageous effort to let pieces of their child live on in others. I just want to give them a hug. So please, this month, if you are not already, become an organ donor. No one likes to think about death. But "life" happens, and when an unfortunate event arises, organ donation can provide a sense of hope within a negative situation. One person can save up to seven lives...and LIVE ON in these seven individuals. Makes me speechless.

An amazing young boy received the gift of life over the weekend. I met Zack Rogers (6 years old) and his family while we were in Pittsburgh. They are from Maryland and would travel to Pittsburgh for Zack's cardiac care. He was diagnosed with restrictive cardiomyopathy 3 years ago, and was monitored through cardiac meds and later placed on the transplant list as a status 2. That is when Jessica (mom) reached out to me after having read my blog. We kept in touch and Zack's progress continued to decline, so he was placed on the transplant list as a status 1a a little over 120 days ago. Throughout ALL of this stressful ordeal, Jessica was diagnosed with breast cancer. Talk about a STRONG family. Fighting for their son's life, and now having to fight for your own. Jessica underwent treatment at UPMC while they waited for Zack's heart. Early morning, April 3rd, after 623 days on the transplant list (again, for awhile listed as a status 2, then later upgraded to status 1a) they finally received the call. Zack is doing GREAT, and so is Jessica and the rest of the family. I pray Zack has an easy recovery and this family gets the peace they deserve. Jessica said it best about organ donation, "I am so thankful for our donor family turning their own tragedy into our family's miracle." I hope their donor family is aware that there are so many people praying for them. Congratulations, Zack, and family! I have been thinking about you all this entire weekend...and probably will until you all are back home in Maryland!

I have more news coming this week, so stay tuned, Also, this week is Nolan's second birthday week! His birthday is Sunday, April 12. Can't believe this little man is going to be two!

#nhos #donatelife