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

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

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:

http://www.gofundme.com/nhosrockinhearts3

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

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

March Madness

(POSTED BELOW WAS WRITTEN IN EARLY MARCH)

Wow. Time REALLY flies. February is the shortest month of the year, but typically is seems to DRAG...however, not this one. Our highlight in the month of February is our baby girl's birthday. I had all plans to actually throw her a party this year and the whole sha-bang since last year we were still in Pittsburgh. Well, needless to say, plans got diverted.

A few days after we returned back from Nolan's biopsy (end of January), Nolan and I went to see an optometrist in State College because his right eye tends to move inward, which you probably notice in pictures. The appointment went great and the optometrist does not feel he will need any corrective surgery. She suggested some exercises Nolan can do with our OT that will help strengthen the eye and she also says she believes Nolan's vision is appropriate for his age, which is all reassuring because with him having three strokes it was a concern for us. SO - successful appointment.

The next day Nolan woke up screaming, which really is not his norm. The minute I looked at him, I knew he was sick. He had been working on a cold/ear infection on and off since Christmastime, and I could tell something was brewing. He gets the classic red cheeks, irritation and of course, just wants held. I took his temperature, and it was normal, so I figured it was just a rougher morning. He did sound a little rattley in the chest, but nothing I was overly concerned about. In the back of my mind though I thought to myself..."I bet I see him later today in the ED." And sure enough, we were in the ED by the afternoon with a 102 fever.

His demeanor was fine and even didn't sound that rattley in the chest when I met him at the ED (he was brought by my mother-in-law.) So, I was shocked when tests came back and he popped positive for RSV! To make a long story short, we ended up being admitted and on courses of antibiotic IVs for over 10 days. The nurses, Dr. Gombosi and the residents were all great, as always, in the pediatric unit of Williamsport Regional Medical Center. I am so thankful for support Children's Hospital at Pittsburgh gives the team here locally when Nolan is admitted. We were never nervous, just glad that we were finally going to kick this lingering cold/ear infection/RSV once and for all (well, at least for this season.)

SO, we got discharged on Valentine's Day, and it was great to all be HOME once again! Riley's birthday quickly followed, and it was highly advised that Nolan not be around people, so we had a quiet, but fun, birthday dinner for Riley. She probably got more gifts than she would if we had a party, so needless to say, she was happy! The following week, Matt and I had our first vacation planned ALONE. We had all intuitions of going to an all-inclusive resort in the Caribbean, but Nolan's recent ailment scared us to be close. So, a vacation within driving distance in the dead of winter? We decided to go skiing! And, it ended up being one of the coldest weeks of the year, but we did have a great time. If you are ever looking for an awesome place to ski on the east coast, Stowe, Vermont is awesome! We stayed at the Stowe Mountain Resort right at the base of the

mountain. The lodge is exactly what you would imagine it to be. Very family friendly and the town is quaint and the people are nice. Admittedly, it was hard to totally relax. This was our first time away from Nolan for this long...but, him and Riley were in great hands with my in-laws and my parents.

Currently, Nolan is doing great. We are SO close to spring, I can't wait to get him back out into the world and allow him to see people! :) We have almost made it through our first winter home, and next winter will be much easier as his immune system will be stronger and Matt and I will be less paranoid! :)

We hope you all are doing well...happy March! Warmer days are on our way!

#nhos

(TODAY) :)

This is just an example of how crazy and busy life has been! The past few weeks have been great. We had the GI bug hit our household...everyone got it, except me. Now we are all healthy and ready for some warmer days. We are so excited to bring Nolan out into the "world." I have a lot to catch up on, but for now I will just give a quick update on our little guy.

Appetite is back and weight is rising. ALL great things I love to see. Developmentally he seems to be excelling. Words are forming left and right. The latest:

• See ya!
• Thank you.
• Welcome.
• Have a nice day!
• More.

Just to name a few. (all baby talk, of course) My most favorite thing right now? He hums and sings songs. It is adorable. We have such an amazing team of therapists...and our nurses, just awesome. You can tell they work hard with Nolan daily. So thankful! I honestly NEVER in my wildest dreams would have thought Nolan would ever be where he is today. A year ago from today Nolan couldn't even sit without support...now he is sprinting around our house. Life isn't just good - it's AMAZING!

Our next exciting adventure will be back to Pittsburgh the end of May for another biopsy. At that time we also have an appointment with nephrology, pulmanology and genetics. 

Nephrology is to check out his kidney function. The last time we were in Pittsburgh his pH levels were pretty off, so he has been on sodium bicarbonate as a supplement. It is pretty common for transplant physicians to be pretty cautious about the kidneys. Because of medications, many transplant recipient's kidneys take quite a beating. Many have to ultimately receive a kidney transplant down the road. Because medicine continues to progress and side effects are easier on other organs, we are hopeful we won't have to go down this route. With that said, our team of physicians err on the side of caution (as they should!) and are making sure his kidneys are functioning appropriately.

Pulmanology is to check our Nolan's respiratory tract. Because he has had so many respiratory viruses this past season, again, our physicians want to make sure they aren't missing anything. So, we will see a pulmanologist that specializes in transplant patients.

Genetics - well, self explanatory. Although Matt and I are done having kids, we do want to make sure that the cardiomyopathy isn't something that is in our make up. We do not know any of our immediate relatives or past relatives that have suffered from this disease, however, again, to play it safe we are going to see if we can get some answers. In my gut, I personally feel this was due to a viral issue. BUT - I am NOT doctor. I can say that Nolan had multiple echocardiograms that all came back perfectly normal until September 30, 2013...so, it was definitely not something he was born with. BUT, I guess that is why we consult genetic doctors...hoping to get an answer.

That is really the latest here! I have a couple blog posts coming up that will be dedicated to a few things coming up related to Nolan and forming a team to give back and help others in the time of need. I am beyond appreciative of what our community has done for our boy. He has so many people that love him and TRULY support him...because of our friends/family/strangers, Nolan has a nice trust fund set aside for him in life that he can use for medical purposes. It puts us at ease, more so it will put him at ease when he becomes an adult. So, it's our time to pay it forward and give back to others. More on that later.

WELL - back to March Madness! I have UVA going all the way! GO WAHOOS!

#nhos

Meeting Milestones

Happy Friday!

I am looking at my calendar and I find it hard to believe it is January 16 already! A year ago we would receive "the call" in less than 10 days - and we had no idea. Our first Heart Anniversary is quickly approaching. We have gone back and forth on how we want to celebrate and reflect on this day. At first we we very ambitious saying we wanted to throw a party (if you know us, we like a good party!). Now here we are present day, and it's flu season. There are so many illnesses going around and with Nolan being immunocompromised, we have decided to spend it with our family. Not only does this day remind us of the challenges we went through to get to where we are today, but we also remember that a family made the decision to help GIVE us these challenges. If it weren't for them, we may have not been able to see his beautiful face and adorable laugh every day. I wrote our donor family when we were 6 months out post-transplant, and I will also send them a year update. I personally still have a tough time wrapping my head around all of this and that is really happened. It is truly a miracle and blessing. I am sad we had to go through this, but now that some of the rocky times are behind us, it really has made us stronger...I have learned a lot about myself, my husband, my family and friends, complete strangers. I do enjoy life more and I think everyone who is touched by Nolan's story feels the same. Matt and I had the conversation about what we think Nolan will be like when he is older...and to even have perspective like that is...awesome! Even 6 months ago I do not think I could confidently look that far into the future - but now, I know we can.

Nolan has had a great week! I pray and hope we continue on this course through the winter months. We are all surrounded by flu, stomach viruses, respiratory issues...eeek! Spring/summer can't come fast enough! I normally do not like to wish time away, but right now I am OK with speeding it up a bit. I am mainly concerned about keeping him 100% healthy until his biopsy on January 30. Not that I don't care if he gets sick after, I just really want him to get this biopsy done because he has not had one since July!

Wednesday we had out three-month review with intervention (through the state - they provide our PT and OT services). It was a great meeting and everyone is beyond thrilled with Nolan's progression these past three months! He is actually in the milestone requirements for walking...yay! Our next biggest goal is to start broadening his vocabulary skills. Currently he only says about 10 words. Now, Nolan DEFINITELY has a language of his own, but he does need some concentrated help in this area. He will start receiving speech therapy every week and I could not be more excited for him. The past few weeks he has excelled developmentally and I am so thankful for all the amazing help he has received. So, he will still receive OT twice a week for motor skills and continue to work on eating properly, PT every other week for evaluation and work on movement coordination and now speech! My personal, ultimate goal? I want to see Nolan go to preschool at our local YMCA when he is 3! We've got some time and will get there!

That is about it. Besides routine lab work our next appointment is the biopsy! I am ready to get that done and out of the way!

Hope you all have a great weekend! Thank you for rooting for our little man!!

#nhos

Welcome, 2015!

It amazes me how quickly time passes!  I always have intentions to post AT LEAST once a week, then all of a sudden two months has past. I blame the holiday madness :)

Where to start? First off, Nolan is doing great and is now (almost) 21 months old! He has graduated from fast crawling to now (clumsy) running. YES! We have a solid walker. The eating is still going wonderfully and he has a big boy appetite. He truly enjoys FOOD (which is something I battle with Riley!) We are now teaching him how to use utensils to eat, which he is not a total fan of, but is catching on.

Verbally he is starting to say some words and is super chatty. His recent word is "stinky," which is probably because I say it to him often :) I feel like his verbal skills are starting to come together and things are starting to make sense. His inflections sounds like he has something to tell you, and it's super cute. Common words: Dada (of course!), Mama, dog, bye-bye, bath, more...just to name a few. I also have been told he says "Gina" which is his physical therapist. HA! He does make crazy sounds like rolling his tongue and has a language of his own. Someday it will all make sense!

Physically our occupational and physical therapist work on gross motor activities like passing a ball, switching items from one hand to another, sensory development, etc. He loves to throw a ball and pick it up...throw it again, pick it up. Recently he found interest in Riley's little play kitchen and enjoys annoying her while she is playing with her doll house. He definitely knows when he is getting a rise out of his older sister whether it is pulling her hair or purposely getting it her way. Riley has learned to handle it better than she did in the past. Let's just say, there may have been some pushing and shoving in the past. Sibling rivalry...gotta love it! We are working hard at being consistent with both. Even though Nolan is so precious and sweet, he is a little boy looking to cause trouble and needs some discipline!

Nolan is truly just a sweet little man. He is turning into a toddler right before our eyes and it is a blessing to see. When I look at him it's not who I was looking at a year ago...even 6 months ago. He is exactly what I expected my son to look like the day he was born a "perfectly healthy" baby...even having been born 6 weeks early! Looking back I remember our wonderful transplant coordinator (who has recently moved on to a new job and is sorely missed!) would tell me, "I promise, your life will be "normal" (and yes, she did use air quotes because really, what is "normal?") again someday. He will be a healthy, happy kid!" And she is right. Thank you, Alice, you were right!

Coming up! Nolan was scheduled to have his routine biopsy right before Christmas, however he came down with a minor cold and ear infection. We are now scheduled for Friday, January 30. It is hard to believe that Nolan's first heart-day is quickly approaching on January 24. Emotionally things are still tough, but I learn to just swallow that lump in my throat and move forward. Little things bring you back to some of those hard days that we went through or even just sitting in the CICU experiencing all that is happening right before your eyes. I won't lie that sometimes I get a good cry out in my car or in the shower. But, it actually feels good getting it out from time to time. I guess it is part of the emotional healing process.

New Year's resolution? To start updating more! Also, to start a plan to give back to other family members withing our community who has a child that is critically ill and experiencing a similar situation that we did. The support we have received (and continue to) from our community has been OVERWHELMING! I wish I could personally thank everyone or write a letter of thanks. You are all truly a huge reason why we are where we are today. Beyond thankful and blessed...not a day goes by where I don't think that.

SO, here's to hoping I can post weekly! It may not be a lot content, but I will be sure to incorporate pictures of our heart warrior. I can't say it enough...thank you all for the continued prayers, love and support!

#nhos