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