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