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