Wednesday, September 30, 2015

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!


Wednesday, July 29, 2015

Slow Down Summer!

I can't believe it is almost August! The month of July has flown by - but all for good reasons. We have been having a great summer filled with family time at our cabin, fun time with friends and a beach vacation coming up the last week of August. Matt and I truly feel blessed to watch Riley and Nolan growing together this summer. Much of their lives together have been pretty separate, and now seeing them play and interact with one another makes my heart flutter. Riley is definitely taking on the roll as big sister, protecting (and sometimes dominating) Nolan; and my favorite is when I see her give him a hug or kiss. So special and precious. These are things over a year ago I was not sure I would ever see.

We just passed our year and a half heart anniversary. It is so hard to believe all the happenings this past year and a half. I would have NEVER imagined Nolan would be where he is today. A run down on where Nolan's health is today:

Neuro: Nolan has a neurology appointment in the coming week or so. He will get an EEG to see if he has had any "seizure" like episodes. He could have had seizures, but not present them because he is on Keppra, an anti-seizure meds. I do not think the doctor anticipates these findings, but a positive EEG will give us the green light to start really weaning off Keppra. We love to get rid of meds if at all possible! Nolan also wears an eye patch 2 hours a day to help strengthen his right eye which tends to get lazy, most likely due to his strokes.

Heart: Nolan's last two biopsies have been favorable being at ZERO rejection! He is still on prograf, an antirejection med, at a pretty low dose...that is the only antirejection med he is on. His donor heart is growing well with him and is as strong as ever. Nolan is so incredibly active. He runs and climbs like any other to year old without showing signs of fatigue. I still am in awe when I hold him close and can feel his heart beat. This is not his birth heart, but the heart of a beautiful angel who is with him every day. His donor is what keeps his life flowing...literally. This reality still hits me often and I am overwhelmed with so many emotions. Nevertheless, we are so thankful...daily...every minute, thankful.

Kidneys: We think because of the prograf, Nolan's kidney function have been slightly off. To help this, he take sodium bicarbonate twice a day. It's kind of like salt water. Not fun to give, but we have to do what we can do keep his kidney function appropriate. We were off of it for awhile, but recently had to start back. We have been seeing a nephrologist in at Children's Hospital in Pittsburgh when we are in town for biopsies. Our next appointment is in October. Oh! And so is his next biopsy!

PT/OT/Speech: Nolan graduated from PT having met the appropriate skills for a two year old! He is running, climbing, trying to jump, dances...more climbing :) He is still receiving OT. Sadly our amazing OT recently had a stroke, but is doing amazingly in her recovery. She has helped Nolan immensely by getting him to eat and providing therapies for his gross/fine motor skills. We miss her so, but are so thankful that she is doing well and working hard in HER recovery. :) We DO have a new OT who is great, also. She is teaching Nolan how to string pasta noodles, play with different textures, following commands, etc. Week to week he is turning into a little boy! I have to remember to treat him that way because I instantly still treat him like a baby. I think because I missed 9 months of him growing up :) Lastly, Nolan has an amazing Speech therapist. He definitely has his own language and says a lot of words and some sentences. We are now starting to understand the things that he wants and can kind of converse with him. Again, every day is a new word or things just sound clearer. I would have NEVER imagined to hear his voice!

I have so much more to catch everyone up on. I have pictures from the Rockin' For Little Hearts concert and a ceremony we were involved with for CORE (Center for Organ Recovery and Education.) I also want to take a minute to ask for your prayers for a dear little girl from our area. Her name is Angelina. She has been battling Synovial Sarcoma since April 2014. This is a rare cancer, and while she was in remission for some time, she is now back at Children's Hospital of Philadelphia. It pains me to see any child struggle, along with the parents. My prayers have been with this family since hearing that Angelina was back at CHOP. You can read more about her story by clicking here and please keep this family in your prayers!

MORE SOON! Thank you for all the love and support - and I will post more Nolan pictures in the near future!