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!

#nhos
#angelsforangelina

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