I Am Back!

Sorry for slacking on the updates! We had a busy, but fun weekend. Last week was probably the most normal and best week that we have had since Nolan was born. He has been pretty much a perfect one year old. Very chill, chatty, giggly and on a good routine. As I sit here Riley is asleep next to me on the couch, Nolan is asleep in his swing, Matt and I both on our computers...Pens hockey is on...life is good.

Saturday was a pretty amazing day. It started off with a 5K in Nolan's honor organized by Hayden's Heart non-profit. Ady and Rob Dorsett (parents of Hayden) are amazing people. I felt as though I had known them for a long time when I actually just met them that day. There is an immediate bond between heart families. I can't quite explain it, but it's there. Ady and Rob started Hayden's Heart in memory of their son, Hayden, by helping other families in their time of need and raise CHD (congenital heart defect) awareness. I had heard about Hayden prior to even being pregnant with Nolan, so when Ady reached out to me asking to help, I was honored...and it immediately brought to tears. I have a feeling we will continue to help each other raise awareness about CHD and other pediatric heart conditions (such as cardiomyopathy) for many years...and I look forward to it! Thank you so much, Ady and Rob. And congratulations to you both on the newest member of the family - Hudson is a beautiful baby!

Also on Saturday there was another 5 K event in Danville, PA. Unfortunately I could not make it, however we had other family members representing...Matt's parents, Riley and his aunts (Cathy, Kim and Nancy). The race was organized by friends from the area - Jessica Amon and Erin Marion. They had a good turnout and I think the weather held up! Thank you both so much for taking your time to raise funds for our little man. It means so much to us and will help ensure that he does not have to stress about monies for continued care throughout his lifetime.

On Saturday after the race, this mama had the day off, thanks to my wonderful husband and in-laws. Matt watched Nolan for the day/night and Matt's parents watched Riley...I got to spend the day with some of my favorite gals celebrating bride-to-be, Maureen. We first went to an amazing bridal shower and then had a girls night out at her family's cabin. (Yes - ladies at a cabin...and we actually made our own fire!) Needless to say, I took advantage of my time off and let loose and had LOTS of laughs with these funny gals. I finally feel human again. :) Maureen - I am so happy for you and Conor...you both have so many amazing memories ahead of you. Thank you for letting my family and I be apart of the first memory as husband and wife! And thank you gals for a great evening!

Nolan has a pretty normal upcoming week. Thursday he has an appointment with his cardiologist in Harrisburg. In two weeks we'll be back to Pittsburgh for his fourth biopsy. Pretty soon they will slowly continue to space out! He will have physical therapy appointment this week (once a week), and he'll start occupational therapy next week. He has been sitting for quite awhile on his own, we're practicing army crawling, he eats a little throughout the day...I would like to practice more on the eating, so that's my goal.

Thank you to those who attended the races this past weekend! Ady and I talked, and we want to make it an annual event - so more on that in the future!

#nhos
http://www.haydensheart.org/

And The Good Week Continues

Well, half-way through another week. I hate to wish life away, because I certainly don't want to, but as each week passes I know that life will get a smidgen easier. Yes, we are still bound for the ups and downs. But, the further away we get from the transplant the more we learn about what medicines work for him and what does not, medications will start dropping from the daily regimen, the better he will get physically and the stronger his compromised immune system will get. I am pretty sure as a parent of a transplanted child you never stop "worrying," but I have to imagine that it isn't so intense. Or at least I am hoping for that day.

All in all we have had a pretty good week. Yesterday he had an amazing day. No throw ups, very active and happy. He had decent day today. He did have one large throw up and he is having some funky GI stuff going on, which I will spare you all the details on. I did provide some wonderful pictures to our transplant coordinator, which I know she loved. :) (you're welcome!) Physically he is doing amazing. I was just watching him on the monitor (he is asleep) and he is rolling all over his bed, sleeping with his knees tucked underneath him (like a semi-crawling position) and showing some real mobility. He is standing on his own for a short amount of time and looks as through he is ready to figure out crawling. THAT should be interesting when he is hooked up to a feed.

So tomorrow we have occupational therapy coming for the first time. I am excited to meet our therapist and get this boy EATING! Our nurses have been working daily, but I am ready to get a solid plan and work hard at it. I want to have this tube gone by the end of 2014! Then Friday afternoon Nolan will begin physical therapy. It is awesome because our nurses are very involved and will work on all the therapies everyday throughout the day. (Have I mentioned that I LOVE Williamsport Bayada Pediatric Nurses? Amazing!)

OK - Matt and Riley fell asleep on the couch and they are snoring in synchronization. I am tempted to leave them both down here.

OH! Quick plug for two Nolan events going on Saturday! Hayden's Heart 5K for Nolan will be at the Williamsport High School and Nolan's Heart of Steel 5K will be held in Danville, PA at Hess Field! Thank you to Ady Dorsett and Hayden's Heart Foundation, and Erin Marion and Jessica Amon for organizing and raising monies for Nolan's fund! It means so much to us, we are so blessed!

#nhos

Finally - Some Normal

My days have been super busy being back at home. I enjoy writing updates because I do want to keep everyone in the loop about Nolan's journey and I want Nolan to some day read about his story. I also do not want to forget this part of our lives, as we naturally seem to forget about the more tragic and hard times. This has been some of the most difficult times of our lives, but one where we have gained an amazing appreciation about life, family and friends.

So, Nolan is home! Matt and our warrior got home late Friday night. He is not totally out of the woods yet. When he left CHP his liver enzymes were still high. There are two specific enzymes: alanine transaminase (ALT) and aspartate transainase (AST). Today he got lab draws done and his ALT was 446 and AST was 239. He was over 1000 before, so the levels have come down a lot, but this is still high. We are hoping that these levels were heightened due to medications; because of that they did remove two medications. One was an anti-rejection medicine, Rapamune, and the other was an antibiotic, erythromycin. No other meds have been replaced, so currently we are off of two meds...which is exciting if everything remains stable. Today they also checked his FK level which lets the doctors know that whether or not he is receiving the proper amount of the anti-rejection medicine, Prograf. While he was at CHP he was also tested for various bacterial and viral infections...all of which, so far, have come back negative. WITH ALL OF THIS SAID, we are not 100% sure why the liver enzymes went array, however, it seems we are trending down and we should get a better answer by tomorrow.

Nolan seems to be doing better. Especially today. He has still had some bouts of throw ups here and there, but with his liver enzymes being high, he could not be feeling well. We had a nice Easter holiday. I am pretty sure this was our first holiday all together...at home! The Easter bunny came, Riley, my parents and I went to church, we had a nice family dinner (McLaughlins, Everetts and Uzupis) and then everyone went out to the Cabin and Nolan and I relaxed at home. Just all around a decent day.

Last week was a rough week for us. It seemed like we had some sort of situation every day. Crossing my fingers, today was a great start to the week. First, it was an absolutely gorgeous day. Second, Nolan had lab draws today and they got the draw on the first poke. Third, Nolan was pretty chipper all day...having one significant throw up. Fourth, I am finally getting SOME organization done to the house and Matt has projects going on in the yard. Fifth, Nolan's buddy Ollie is stable and hopefully on his way to some brighter days (more on that in a minute). AND FINALLY - two of my co-workers are about to have babies and I am excited to meet them both! I actually feel like I (dare I say it...) had a normal day. Came home, made dinner, did the normal house chores, baths, etc. It feels SO good!

Last...I would appreciate many prayers for our buddy, Oliver (Ollie). Unfortunately Oliver crashed Easter evening. I have a pit in my stomach because Ashley, Ollie's mom, was standing right over him when it happened and witnessed the entire horrifying moment. FORTUNATELY Ollie is stable and no damage was done. The Halligan family have a big week coming up and some decisions to be made, all that will help this amazing boy gain strength and grow...so I am praying this wonderful family has a positive week. They deserve it.

OK - I am hoping to continue to post daily! If anything, I always put a little something on Nolan's Facebook page: Nolan - Heart of Steel.

Good night! Thank you all for the prayers and support last week. It will be a bumpy year, but we have come so far and have such an amazing team of people (ALL OF YOU!) helping us through!

#nhos

#donatelife

http://childrenspgh.org/2014/04/18/nolans-heart-of-steel/

 

And...Back to Pittsburgh

Sadly, yes...Nolan and his daddy are back in Pittsburgh. I was getting ready for work this morning when I got a phone call from our transplant coordinator. I knew it wasn't a great thing that she was calling first thing in the morning. She said that Nolan's liver enzymes through the roof and GI and Infectious Disease wanted him admitted. Not a fun start to a morning...

So immediately I was ready to pack a bag and had intentions for both Matt and I to head to Pittsburgh. But when Matt and I thought rationally about everything our first thought was Riley. She really has been struggling with us leaving her and we have worked hard these back 3 1/2 weeks to get her back on a routine and a normal schedule. Matt has time off work and it made sense for him to take Nolan and for me to stay back with Riley.

Our nurse was at the house when we got the call that Nolan needed to come back to CHP. I am so thankful because she drew up all our meds and packed up his feeds, medicines and all the other miscellaneous items that Nolan uses throughout the day. I took care of packing his clothes, blankets, diapers, etc. Matt took care of Riley. So, it was a good team effort. We got Matt and Nolan on the road by 8:15 am. Matt and I had a moment feeling defeated, but we got over it quick and went back into "GO TIME" mode knowing that whatever needs to be done for our little guy needs to be done.

You are probably thinking...what do high lever enzymes mean and how to you fix it? This could be simply from one of his anti-rejection medications. That was one of the first things they did. They removed his Rapamune medication. They will run a series of tests; ultrasound, blood work, etc. Hopefully from these tests they will figure out what the problem is.

Matt and Nolan got admitted around 12:30 pm. They are back on 8a with all the wonderful nurses that we love. I know they were excited to see Nolan, but of course no one wants him to be there. Matt has let me know that everything is good...Nolan is in good spirits; he has had some throw ups and blow outs. He did get his ultrasound and his liver looks good and seems to be functioning normally. Some blood panels came back favorably, also...so far, so good.

That is where we are at. I am playing everything by ear. With Easter coming up this weekend and the possibility that this could be a short visit, I am going to stick back home with Riley until we get a better answer as to what is going on. We are all OK and in good spirits. We are realistic that Nolan is still fresh from a transplant and this first year will have its rough patches. Matt and I do have moments that we feel life is dealing us a really crappy hand, but when you look at the "big picture" we are truly blessed. We have conquered so much and will overcome this bump as well.

We do appreciate the continued prayers and want you all to know we feel so grateful for having such an amazing support system helping us through these crazy times. More to come tomorrow morning!

#nhos

Busy Days

I am back!

I am not sure where to start? We now officially have a one year old boy. So hard to believe! Sunday we celebrated Nolan's birthday out at our cabin. It was a fun afternoon with our family and a few close family friends. The weather was amazing and I am so thankful we all got to spend the day outside. Being out at the Cabin has me ready for summer! If the mosquitoes aren't totally horrible this season I am betting we spend much of our time on the Loyalsock Creek.

We had a beautiful birthday cake made by one of my friends, Rachael Thomas. Not only was the cake AWESOME looking (Super Man themed...thanks to our friends in Millville, PA and their creativity), it was absolutely delicious. She made us a dozen cake pops (LOVE!), a cake and a smash cake for our little one year old. We let him at it, and he wasn't interested in eating it, but definitely in to smashing it...then putting it on his daddy's face. Pictures to come soon - I got a new camera and I need to figure out how to get my pictures off my camera using our wireless Internet. I hope to have them tomorrow!

The day got ahead of us and we didn't even get to open presents. So, Riley and I took care of that yesterday. We had a little opening party and Nolan got some great gifts. Thank you! It has been a challenge reigning Miss Riley in and sharing. She has been a little off her game...breaking rules, not pottying...THREE YEAR OLDS! They are a challenge! She is harder to deal with than Nolan! BUT, her cuteness always seems to make us forget about it all at the end of the day.

Nolan had a pretty busy day. He is still having some throw ups. We are always in constant contact with our wonderful transplant coordinator, and she keeps the doctors informed on what's going on with Nolan. So, we are just keeping an eye on him. Babies do throw up, he is teething like crazy and his gag reflex seems to be pretty sensitive again. I am looking forward to our therapy sessions starting up again next week! I think once we get these services started back up Nolan is going to progress quickly. This morning we had labs and then I heard from our home nurse that Nolan decided to pull his feeding tube out. She managed to get a new one placed and the rest of the day went pretty well for him.

I did my good deed today and donated blood! I am going to try to do it as much as I can. Thinking about how much blood Nolan received while at CHP, donating blood is such an easy, quick way to give back (if you can stomach it!)

Tomorrow Matt and I are going to go out on our first date in quite a while. My parents are going to keep an eye on the kids for a few hours so we can have some adult time. It is definitely needed and I am looking forward to it!

Life at home is VERY SLOWLY coming together. I have so many things I want to do; I am trying to just do what I can and not stress. It is so hard. I wish I could rest my brain! On that note, I am going to try to turn it off and get some rest. We are getting consistent 3 am wake up calls...let's hope for a FULL night of rest!

#nhos

Happy FIRST Birthday To Our Baby Boy

Dear Nolan,

Today we celebrate your first birthday. Only 3 short weeks ago we were leaving Children's Hospital of Pittsburgh. Your first year of life has been a roller coaster that most people will never experience in a lifetime. Because of many prayers, an amazing team of doctorOs, nurses and therapists...and last, but most important, your donor and their family, you are here celebrating this day. Seven months ago your dad and I could not promise that you would see this day...ande we are! We look forward to many more to come.

You were born on a Friday afternoon, April 12, 2013, at Williamsport Regional Medical Center. I went into preterm labor at 33 weeks and April 12 was the 5th day at the hospital and my 34th week of pregnancy. It was time for you to come into the world, we could wait no longer. You were perfect in every way! You had a head full to dark hair and a good cry! Because you were early we were afraid you may need further support in the Level 2 nursery. After four hours of observation, you were cleared to stay with us in our hospital room. We were released in the normal amount of time and ready to start our lives as a family of 4.

Two weeks went by and we noticed your color was off and you were listless while in your swing one afternoon. Being cautious, we decided to take you to the emergency department at Williamsport Regional Medical Center. A few more similar episodes like this occurred, and while hooked up to the monitors we could see that you were having apnea episodes and your oxygen level was not stable. We spent 5 days at the hospital and was discharged with an apnea monitor and doses of caffeine, which acted as a stimulant. When things did not get any better, we went back to Williamsport and they felt more comfortable for you to go to the Children's Hospital at Geisinger. We were there for two weeks where they diagnosed you with apnea of prematurity.

The following three months you spent some time here and there in the hospital for respiratory issues. You would need to be on oxygen for a few days and maybe some antibiotics. The whole month of September you had a raspy cold which we were told to treat with breathing treatments. On September 29 we were not happy with the way you sounded and with the fact that no progress was being made. We agreed to take you to your doctor on the morning of September 30. I am so thankful we got in first thing in the morning because by 3 PM you were being taken by LifeFlight to Children's Hospital at Hershey. The rest of the story is documented day to day. And now, here we are. You are sleeping soundly in your swing, and I am actually less nervous of you doing that then I was ever in your entire life. You are healthy. You are going to get to do all the things that we had planned for you the day you joined our family on that beautiful day, April 12, 2013. A day much like today.

I am sure you are going to have so many questions for your dad and I about your heart, our life at CHP, your team involved in your care, what each scar on your body is from, who your donor was, etc. I can't wait for the day to actually sit down with you and tell you all  about it. Most importantly, to let you know what an amazing, inspirational person you are for so many. You remind us all what is important in life...friends, family, faith, love. I would be lying if I said everything is PERFECT right now, it's not. Your dad and I are still trying to acclimate to our new life, learn how to take care of two kids and make sure you and Riley are getting all you need in life...and more!

We are excited for tomorrow. We are going to celebrate your birthday with your grandparents at the Cabin. It will be a day to celebrate not just your first year...but LIFE. We all are so thankful you are with us. You were meant to be here...I knew it all along.

We love you so much, Nolan. We hope your second year of life is filled with HEALTH and HAPPINESS.

With all of our hearts, we love you more than you know.

Love,
Mommy and Daddy

Frozen Again

Well, we are on the second time watching Frozen and we just got it two days ago. This time Riley can't seem to get close enough to the TV. With that said, we let Riley back in the house. Hahaha. I am pretty congested too, but I think mine is allergies...at least I hope. I am keeping my distance from the little guy.

Nolan had an amazing day. We have slowly been increasing his bolus feeds and decreasing his feeds at night. So far it has been going great. This was the first day that he has not thrown up AT ALL in a long time (hope i didn't speak too soon!) He is in such great spirits and has really turned a corner. I pray that everything stays this way.

Tomorrow Matt and Nolan will head back to Harrisburg for his appointment with the Hershey's Pediatric Heart Group. I am sure all will be well since he just had an appointment a week ago. Our next appointment will be April 24 back in Pittsburgh. At that time we will have a normal clinic visit with the transplant team. We will continue to see a cardiologist every two weeks until probably after our next biopsy, which is on May 16.

We have almost been home for two weeks. It hasn't been easy, but it is also not the most difficult thing. It is super stressful worrying about germs 24/7 and it's not easy to be home bound...but it beats being in the hospital. I have thought a lot about our past 6 months and it now truly feels like someone else's life. There's definitely a healing process involved in all of this. I think my next step is to write the donor family a letter. I thought today what better time than this weekend, Nolan's first birthday weekend. It is because of this family and their courageous decision they have allowed Nolan to celebrate this day. I want to thank them for that.

I can't believe that tomorrow is already Thursday. I pray that Nolan has a good appointment and that their travel is painless.

Well, Riley is asking for Frozen "one more time." Maybe we are off Caillou. PLEASE!

#nhos

Quick Days!

Days go quick working full-time and caring for two kids! Last night ALL the slept through the entire night. It was great. Believe it or not, Riley is worse than Nolan. She came into our room Sunday night and insisted that there was a scary monster in her bed. She wasn't even upset about it...she just walked in to our room and said very matter of fact-like, "well, the scary monster is in my bed!" Ummm, what? This kind of creeps me out! But, last night was quiet and I think tonight may be even quieter because we had to send Riley up to my parents for the evening. She is starting to show signs of a cold, so we thought it would be best for her to stay her distance from Nolan. It breaks my heart, but it is the best for us all!

This morning start out with a trip to the Williamsport Regional Medical Center lab for weekly lab draws. We popped in and out pretty quick and I think it is always nice to get Nolan OUT of the house. He will always be pretty cooped up until late July. Poor guy, but he will thank us! I am so excited for everyone to see and meet him, we just can't risk him getting ill. I will feel even better once flu season is over!

After lab draws I dropped Nolan back off at home with his nurse and went to work. It is nice to get away and focus in on something other than "HEART" related things. Sometimes you need a break! That and I do enjoy my job, so it's a win win. This evening we met with Early Intervention. They are who set up Nolan's PT and OT. It's wonderful because it will all be done in the home and the nurses will be involved to see treatment through when the therapists are not there. Like I have said before, we have an amazing team of care givers! Nolan is such a lucky little man. I swear he does look better and better all the time.

Thursday we are back the Hershey Heart Group for our bi-weekly cardiology appointment. Matt is going to take the plunge and venture to it by his self. AHHH - I hope that have a quiet trip!

So, Saturday is the big day. Our baby boy turns one. So hard to believe. Apart of me feels like all of this happened so long ago. I am still baffled. Like, did this all really happen? Did we really spend more than 200 days in hospitals the first year of his life? When you are in the thick of it you just go. But when you think about it after the fact, I just wonder how I could muster the energy to deal! I honestly think I struggle more now than then! I will say this, having our family near has really made this a much easier process. I do not know what we would do without them. They are always there whenever we call on them. We are so blessed. We love you guys so much.

I am babbling now. I am going to SLEEP...and hopefully through the entire night. Tomorrow I will let you all in on some TEAM NOLAN events coming up this spring! We are so honored by the love and support from so many people!

#nhos

Sunny Sunday

Good morning! Everyone is still asleep, so I figured I would try to get a quick post in before our day begins. Yesterday was by-far the most "normal" day we have had in about a year. Exactly a year ago I went into labor with Nolan at 33 weeks. It was a confusing day because I had a c-section with Riley and never experience labor pains. I actually texted on of my best friends, Abby, and asked..."so, what do contractions feel like?" Well, long story short, they were indeed contractions and I was indeed in labor. They stopped the labor for 5 days...and Saturday we will celebrate Nolan's first birthday! The thought of it and this entire year we went through brings me to tears. So much that has happened to him. Most of it people will never experience in a lifetime. We are so thankful that he is still here with us. I would have fought forever.

We have had a very nice weekend at home. Nolan seems to be feeling better. He still has some small throw ups here and there. He has really been showing strength in his legs being able to push and actually stand (supported). This week we meet with early intervention to begin PT and OT again. Now that he is feeling better, we are also going to start working on oral feeds, sippy cup, etc. Physically he is doing great. I am excited for him to begin therapy. Although, once he is really mobile I am going to have to baby proof the house all over again! 

Riley is doing great. She had a fun first week of preschool. This morning she will be going to Sunday school, then her and I will go to church. We are making a point to keep her active, make "Riley" time and ensure she still does what a three-year old should be doing. I am a little nervous because she seems to be getting a cold...so, if it gets worse we may have her stay at my parents house. Sounds horrible, but we can't risk getting Nolan sick right now. She is so good at washing her hands and not getting up in Nolan's face. We tell her how we all need to stay healthy, so it's best to not touch others. Not the easiest thing to do with a toddler.

Well, that is the latest! We are hoping for another good week. Today is going to be beautiful, so we are going to take a drive to our cabin and go for a walk! I will update later today with pictures!

#nhos

Getting Better

We woke up to a smiling and happy Nolan this morning. No throw ups through the night, with the exception to one gag in the middle of the night. We also woke up with a happy Riley! So, it was a pretty smooth sailing morning.

Nolan had a better day. Some of his labs came back, and all are relatively normal. We are still trying to figure out the logistics of appointments. Nolan should still be seen by a cardiologist every two weeks. Since we just had one this week and our next appointment is in Pittsburgh on the 24th, he needs to be seen in between those two appointments by a cardiologist. With that said, we are just trying to figure out the when and where. We thought we lucked out by there being a pediatric cardiology clinic at our local hospital in Muncy through Hershey Medical Center, however the clinic sits right next to the ED (germs!) and the echocardiogram clinic is dated. Both of those issues we can't deal with, so we may have to simply go to the Harrisburg office, or to another clinic nearby. More on that later.

Amber, our nurse, told us that Nolan was in much better spirits today. They played, took a bath, went for a walk...all around a great day for him. I am looking forward to the weekend to spend time with the kids and family, and get stuff done around the house. His top front tooth is officially through. I think that makes 3 1/2 teeth!

One of our heart friends in back in the CICU. Little baby Cohen was having a tough time breathing and had to be reintubated. Please say your prayers for this little babe, as he has been in the hospital since the day he was born. I wish I could give then all a hug! I hear little Ollie is showing signs of improvement, however he still has a long road as well. Any prayers for these two young babies is greatly appreciated

OK - I am exhausted and the kids are drifting off. I am off to bed! The weekend is so close!

#nhos

Routine Appointment Day

Well, Matt and I had a busy day today. First thing, we think Nolan is finally over the hump with the stomach bug. No throw ups today, less "blow outs" and definitely in better spirits. WHEW! No one likes a sick baby!

So, today was filled with appointments, all routine. We started our day by going to our primary care physician. It was strange walking in the office and being guided back to the same room where our doctor suggested I take Nolan to the ED because he was not happy with the way he sounded after a breathing treatment. That was September 30. The day that changed our lives. Needless to say, Dr. Wetzel was thrilled to see Nolan and we had a great appointment basically reviewing our medications, how often we plan to meet, how Riley was doing, how Matt and I were doing, etc.

After our first appointment, we had to get lab work done. We went to Williamsport Regional Medical Center's lab and were greeting by the staff of the lab. Thankfully we got a lab draw from Nolan on the first try and the whole process literally took us 20 minutes. We spent more time chatting with some of our co-workers at Susquehanna Health.

Next, we were off to Harrisburg to meet with our cardiologist from Hershey Medical Center. Dr. Dispenza actually was on when we were taken by LifeFlight to Children's Hospital at Hershey Medical Center. He was who told us before we left for Pittsburgh that he suspected Nolan had cardiomyopathy. We did not want to believe him, but...he was right. We will be using Hershey as our cardiology contact for those months that we are not in Pittsburgh. The first month we will probably have a cardiology appointment at least once a month, sometimes two. These will all space out as time goes on. While at the appointment Nolan had the standard EKG and echocardiogram...all of which look good. Now it is just connecting back with CHP. Our next appointment will be April 24 back in Pittsburgh.

ANNNND that was our day. Our evening was filled dealing with our crazy 3 year old daughter (love her, but 3 is tough!) and keeping Nolan entertained. Just a typical night with two young kids. When I get stressed about it all, I try to place myself back to where we were three months ago. At that time I was still praying for Nolan to receive the gift of life. And now, here we are. Adjusting to so much. Matt and I took in a lot from this journey...what is important in life and what is not. We do know even though life with two young kids is stressful and sometimes you just want to pull your hair out or run away (trust me, I was walking to my car the other day and thought, "I am just going to drive and get out of here!!")...they are what is most important. If we would have lost Nolan, we would do anything to have these stressful kid times. So, I am going to take it and LOVE IT!

WELL - back to work in the morning. I want to end by saying our home nurses from Bayada are AWESOME! Today they even contacted me to make sure Nolan was feeling better. We have a great team of individuals watching over and caring for Nolan...from central PA to western PA. And an amazing team of people that continue to pray and root for him everyday. GO TEAM NOLAN! We love and appreciate you all!

#nhos