A Day Never Forgotten - Two Years Later

Everyone has those dates that stick with them for a lifetime. Most are good, but unfortunately, some are not so good. I have lots of dates that stick with me, today being one of them. It was basically the worst day of our lives, September 30, 2013. This was the day we almost lost Nolan. But also one that changed us ALL forever. And with a bad situation, I have learned you have to pull out positives. These past two years we have grown so much. Our families are closer, you find your true friends...and new ones because of the situation, I have such an appreciation for those people who dedicate their lives to wanting to help others and give back, I am definitely softer...any situation can bring a tear to my eye...happy or sad ones, and truly...I love our life. I am not mad at what happened two years ago. Really quite to the contrary. I have realized how LUCKY I am to be surrounded by so many amazing people. I love where I live, work and am so thankful we found such an amazing institution like Children's Hospital of Pittsburgh.

It has been two years since we almost lost Nolan, but since then Nolan has shown us that he is a fighter. We have done a lot, Nolan has GROWN so much and continues to bring smiles and amazement to us all. Some highlights to Nolan's year:

• Nolan has learned how to eat and drink without his feeding tube.
• He was only hospitalized twice and has not been back since November, 2014.
• He started walking - now runs, climbs and is starting to jump! He graduated from having to receive physical therapy.
• We celebrated our first Thanksgiving, Christmas and New Years at home!
• Nolan is forming sentences and is learning shapes, colors and counting.
• He loves to sing...and has recently found a love for Elmo.
• He has peed on the potty TWICE!
• All of our biopsies this past year have been ZERO REJECTION!
• We went on our first vacation to South Carolina, and Nolan loves to swim and enjoyed the sand!
• Nolan is now only on 4 medications!
• Lastly, Nolan is a super happy and a healthy boy - and for that, we are so blessed and thankful.

Other great things we got to be apart of this past year. We got asked by the Children's Hospital of Pittsburgh's Heart Auxiliary to be the Guest of Honor at a fundraising concert featuring Bret Michaels called Rockin' For Little Hearts. With the help of many amazing Nolan fans, we raised over $2,000 which was donated straight to the CHP Heart Institute! Combined, the event raised over $139,000!

My dad got the honor to speak at such a touching ceremony held by CORE (Center for Organ Recovery and Education). It was an event for donor families. They had various speakers such as a family who recently donated their son's organs, a cornea organ recipient and us, a pediatric recipient. It was a touching ceremony and something I am so proud we were apart of.

We look forward to our future now. We used to be scared to say that. Now I definitely feel more confident what lies ahead. I look forward to doing more things promoting the importance of organ donation, helping to raise money for CHP and helping other organizations that do so much for other heart families. Most importantly, we look forward to watching our kids grow together. Our hope is for Nolan to start preschool next summer/fall. I think this year has brought Matt and I a lot of relief. We have definitely found our new norm, and really it is pretty "normal!" 

Of course, I have to give a shout out to everyone that was with us two years ago today. I do believe we were all in the right place at the right time. The most important part of the day was with our primary care office that got us in for an appointment first thing in the morning. By 8 am, we were in the ED. From our interactions in the ED with the doctors, to the quick decision made by Dr. Joe Bering, SH cardiologist, for getting Nolan on a Life Flight ASAP, to all the amazing doctors at Children's Hospital at Hershey Medical Center for stabilizing Nolan before they sent him on to CHP. Everyone that day is why we are here today. They got us to CHP, which is where their amazing staff took the next steps to making sure Nolan made it to the day he received the gift of life. There were major bumps, but they always assured us we were going to make it. We are forever grateful to our donor family. I do hope they know that. We think about them every day.

I also have to thank our families. Matt's parents and my parents are so supportive and go out of their way to help us whenever needed. They give us plenty of time to blow off steam or take a night or two away. We are also lucky to have siblings that truly love and care for our kids. Since this all happened, I have been so lucky to see my sister more than I ever have!

Last, but certainly not least, I have to thank you all for continuing to follow Nolan's adventure. We are in the fun times, and I hope it stays this way! I truly feel comforted knowing so many people are praying and watching Nolan grow. He is such a lucky little man! Oh gosh - and really? I have to thank our nurses from Bayada. They are like family to us and I give them SO much credit to Nolan successes. You both mean so much to us.

I hope you are enjoying the beginnings of the fall season!

#nhos