FUN IN THE SUN FRIDAY!

What a beautiful day it was in PA. I am glad we had the sun because we had a long night with Nolan. We didn't even get him down until past 11:30 pm and then he got up again about an hour or so later screaming. He was also having some congestion and coughing, which I still think has to do with allergies. I am thankful for Matt because he ended up sleeping downstairs with Nolan while he was in his swing.

So, what was wrong with Nolan? I ended up taking him to our primary care doctor just to make sure everything was OK. We decided to start doing some albuterol treatments through the day, and our physician assistance noticed that his gums were really swollen. With that said, we are pretty sure he was cutting teeth last night, which caused his crankiness. If his coughing continues we plan on contacting our PA and she will prescribe an antihistamine or him.

Our nurse said that Nolan had a good rest of the day. He took a 3 hour nap...most likely because of the long night. We had a nice night hanging out at home, ate dinner outside and Riley played with friends. This weekend we plan on spending in town, which I look forward to getting stuff done around the house.

OH - labs came back and his liver enzymes went down again, however his FK (prograf) level is low so we had to increase his prograf .3 ml.

So, we are hoping or a quiet night! Nolan, my dad and a few friends of mine are going to run a 5K in the morning (OF COURSE, NOLAN BEING PUSHED!)

Happy weekend!

#nhos

We're Back!

I guess like they say - no news is good news! And that rings true here. Nolan has had a great few weeks and we are so thankful for that. I do want to apologize for not providing updates recently. I feel like the past couple weeks have been super busy and going so quick! It is also hard to update daily because there's not really a lot to say. Which is a good thing, right? I do enjoying writing and sharing my experience with everyone who has been following and rooting for us these past ALMOST 9 months. Maybe I just needed some time off. :)

A quick Nolan update. These past few weeks he has really excelled physically and with his eating. He is on the cusp of crawling, trying to pull himself up (and succeeds at times), loves to stand and just wants to GO! So it all begins...the soon-to-be toddler getting into everything. He enjoys tasting and trying new foods. He struggles with the swallowing, but every week there is improvement. I think it will fully just start to click at some point. I really have to give so much credit to our occupational therapist and nurse. They work with him consistently everyday and I am so thankful for their support. Our PT is wonderful as well. He changes daily and is starting to meet those fun milestones we have prayed to see him do. I can't tell you how many times Matt has said to me, "I remember those days looking at him and not even being able to imagine him sitting on his own...or even bringing something to his mouth." It's the little things that mean the world. NOW, don't get me wrong...I am only human and do get the parental frustrations with their toddler. Currently all he wants to do is stand while being supported (by a person) or be held. So, it is tiresome, nevertheless, a blessing!

Next week Nolan has a cardiology appointment with Dr. Dispenza in Hershey. We had lab work done today, so we are anxious to hear how his liver enzymes are doing. He has had some congestion at night and in the morning - but I am suspecting it to be allergies. I may be seeing our primary care doctor tomorrow just to get his opinion and then have them prescribe the appropriate allergy medicine that will not interfere with any of his current medications. He currently is only on 3 medicines. THAT'S RIGHT! THREE! Prograf (anti-rejection med), Keppra (anti-seizure med) and Nystatin (antibiotic that goes in his mouth to prevent thrush from his feeding tube). Isn't that amazing? When we got out of the hospital and went into the Ronald McDonald House we were on medications every two hours. Now here we are. He is on four bolus feeds a day and no overnight feeds. Slowly as he eats more we should start to decrease the amount of formula he is taking in through his feeding tube. We should be making some changes come mid-July after our appointment with GI.

This has been a pretty crazy week. Monday I was TOTALLY surprised by an unexpected visitor. Ashley, Oliver's mom, totally shocked me by showing up on my back porch. We had a great evening catching up, reliving some sad times...some fun times, talked about Ollie...the future. AND, just girl talk! It was such a fun night, I wish we didn't live so far apart. Despite Oliver's passing, Ashley seems to be doing well. She is such an inspiration to me...so realistic, so in love with her son and is simply a true person. I admire her strength, compassion and outlook on life. I think she just reminded me of what is truly important in life. (My four favorite F's!) Family, friends, faith and FUN! Ashley also left me with an amazing gift. She gave me a hand-blown glass flower that has a little of Oliver's ashes blown into it. It is BEAUTIFUL and so amazing that she left us with a piece of Oliver to watch over Nolan forever. Such a blessing. Thank you Ashley and Trevor! (We missed you Monday!)

WELL, I could go on however I have a mission to wake up early and go running before work. I am hoping to run a 1/2 marathon in August. Also, I have to highlight that today I gave back by donating blood! Every little bit counts!

Thank you all for your continued support, love and prayers!

#nhos

The Latest

(Post started earlier this evening!!) I am taking advantage of some nice, quiet time and going to try to provide a quick update on our heart warrior!

Matt and Riley are outside in the yard mulching while Nolan and I are inside relaxing (Nolan is currently on a feed). I am lucky to have an amazing husband who turned our backyard into a small paradise. We had some wonderful friends help build an awesome fence around our yard so that our dog and kids can run free without us panicking about street traffic or wandering off. Now Riley can play with as she pleases - and she is currently doing so with the neighbor kids. It's fun to watch her grow. She is truly turning into a little girl! I am so excited because tomorrow she starts soccer at the EL YMCA! Like mother, like daughter!

And then there is Nolan. What an inspirational little guy he is. He has had a great two weeks. I think my only cause of concern would be that he gets pretty congested in the middle of the night, but I think that may be allergies and post nasal drip. Something I will have to ask our amazing transplant coordinator (you reading this, Alice??) :) But all in all, he is the happiest little guy I have ever seen! Plays all day and sleeps soundly all night. (For now!!)

I guess I will go from TOP to BOTTOM.

BRAIN. Neurologically speaking Nolan is doing great. He is still on anti-seizure medications because he does have trauma to his brain from his strokes. Typically people are put on anti-seizure meds as a preventative measure if there's ever trauma to the brain. That goes for even major concussions. In September we have an appointment scheduled with a neurologist at Hershey Medical Center so we can establish a relationship closer to home and make a plan to wean him off of the anti-seizure med.

HEART. His heart looks great. Pressures are improving and his rejection level is 1a, which is where we have been from the start. And that is good! Our next cardiology appointment is June 26 at Hershey Medical Center with Dr. Dizpenza, followed by his next biopsy at CHP which is July 18.

LIVER. His liver enzymes dropped dramatically, however they aren't "normal." Maybe boarder line normal, but not quite there. With that said, Nolan is currently still only on 1 anti-rejection med because they want to see if his liver numbers continue to trend down.

GI/FEEDS/EATING. Nolan hardly throws up at all anymore. His bolus feeds are up to 205 ml/hr, 4 times a day...then a very small continuous feed through the night. As we increase his bolus feeds his night feeds will decrease, so very soon he will be off of night feeds. We have OT (occupational therapy) come to our house 2 - 3 times a week to work with his oral feeds. Along with that our nurse(s) work with him a few times daily. I have also been working with him once a night. He enjoys veggie stick, cheesy puffs, sweet potatoes, noodles and Vanilla Wafers. It is so awesome to actually see him engaged and wanting to eat. It gives me hope that we will get rid of the NG tube sooner rather than later.

PHYSICALLY. Nolan is teething like crazy. I think we have about 6+ teeth in. There's hardly a time you see him without a teething toy. He enjoys his bouncer and any other contraption we have that allows him to be in the standing position. He is sitting on his own and can even lower himself to the ground from the sitting position. I think crawling is in the near future as he clearly can get from point A to point B by army crawling. I can see he is starting to try and figure out how to pull himself to standing. SO, I think the crib will be lowered soon! We have PT come to our house once a week for an hour. They are very happy with his progress. We work on clapping, patty cake and playing "SOOOOO big!" He is very CHATTY...and I have to say, he is a mama's boy! :)

In the grand scheme of it all, life is good. It is tough from time to time. I do think we are coping with the WHOLE situation and try to maintain living day to day and not looking too far into the future. Not that we think anything bad is going to happen, but simply because there's still a long road ahead of us. We need to focus on today and look at the big picture...where we started, and where we are today. It is truly amazing...we are truly thankful and blessed for all the love and support we have gotten and continue to receive - and to have him here with us!

#nhos