Ahhh - is it already Thursday night? Weeks are flying, but in a good way. Today marks the first day of May. This month a year ago is around the time when crazy stuff stated to happen with Nolan. First was the apnea, which they later diagnosed as apnea of prematurity. Whether or not all of this is correlated to the dilated cardiomyopathy remains unclear, but needless to say, we never knew a year ago that we would be faced with a lifetime of medical needs for our son.
Nolan and his dad had another adventure to Harrisburg today to meet with our awesome pediatric cardiologist from Hershey Medical Center. Dr. Dizpenza is a very thorough physician, one that I actually did not like while we were inpatient in the PICU prior to being sent to CHP. Why? WELL - because he diagnosed Nolan right off and basically told us around day 2 at Hershey Medical Center that he suspected Nolan would be transferred and most likely a candidate for a heart transplant. I remember talking to him in those very beginning days of our journey trying to make him say the words I wanted to hear...but he wouldn't, therefore I was just not a FAN of him. WELL, present day...he is obviously amazing. He was very happy with how Nolan looked, despite the fact that his liver enzyme numbers are still pretty high (but trending downward). Based on his echocardiogram, he said that his heart looks as good as 12 weeks post transplant should look. BASICALLY, his new heart got an A+. AND, I am hopeful that his liver enzymes will continue to trend to an appropriate number, so in the meantime, we will be following up with weekly blood draws. Matt said Nolan was absolutely perfect today...on the drive to and from and during the echo...ahhh, we truly feel blessed.
Nolan's next adventure will be back to Pittsburgh for his 4th biopsy on May 16. Sometime soon we will also have follow ups with neurology and gastroenterology. We actually speak to GI on a weekly basis and, of course, I bug our amazing transplant coordinator on a daily basis. :) ALL IN ALL, things are going GREAT. You can literally see him change week to week. He is doing PT once a week, and will be starting OT twice a week. Our nurses work on all of these therapies daily, and you can tell. He is sitting alone, standing assisted, army crawling and quickly catching up. So proud.
That is really the latest with our little guy. Our family spoke tonight about future efforts for Nolan's non profit that we formed, and I am excited for us to start doing some work on raising awareness, giving back and helping others...we'll plan on starting this by 2015. We need the rest of this year to focus on getting life back together and make sure our Nolan is in a good spot. SO, more on that SOON!
I have to throw some shout outs to people. First, one of my best friends, Maggie Davis, has organized a run in Nebraska this weekend to raise money for Nolan's fund. I lived in Nebraska for a lot of my youth, so THANK YOU to all my amazing friends who will be participating this weekend. Second, Bryan Younge. He raised $5,000 with his team, Team Nolan/Cru Kumite. They are doing the Tough Mudder Chicago on May 10. THANK YOU SO MUCH, BRYAN! You are amazing (and so is your family). Congrats to him, too, on his newest baby boy, Hudson! Next, Tony Dippolito. This guys is running the Pittsburgh Half Marathon and raising funds for our heart warrior. The Dippolito's have been very dear friends of ours for a long time and spent some time with us in Pittsburgh while we were there with Nolan. ROOTING FOR YOU BIG CAT! LAST...for today...all of these frozen plunges on Facebook. Many people have donated towards Nolan Heart of Steel fund for these crazy, funny frozen plunges...it is COLD to watch! But, thank you! We appreciate your guts to jump into cold water!
That is all I have tonight. I want to continue to provide updates, and I promise to 3 times a week, at least. Nights just go by so quickly.
Weekend is near!
#nhos
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