Day 85

I just reflected back to my post on October 14, 2013. That was the day Nolan was placed on the transplant list. 85 days! So crazy to believe. I have learned so much the past 3 1/2 months. Obviously this is not how I pictured life, but I would never wish for another boy. This little guy has taught me and so many SO much in the past 9 months! I am grateful for that...and I have such a better outlook on life then I used to. Sure, there are some days that are horribly tough and I would do anything in the world to take this away, but at the end of the day, this is who we are now. We only live once, so we are going to make the best of any situation that is given to us. This is what I tell myself constantly every day. Nolan will make this, and he will do amazing throughout his life.

Sorry for missing yesterday's post. If you are not on Facebook, I had a valve burst from the pipe to my washing machine resulting in a kitchen full of water. My dad came to the rescue and helped clean and survey the situation. Luckily none of the pipes were frozen, I just think it was something that was on its way to happening. I am glad I was home!

Nolan has had a great two days. Mondays are busy days filled with his VAD dressing changes, broviac dressing change, PT, OT, speech therapy and an echocardiogram. Matt said he did amazing during PT. They allowed him to put more weight on his legs, which he did well at. Matt said he especially loved being held normally. I think he misses the snuggles. With such a busy day, Matt said the he had a really sleepy day today. Today they adjusted his Lovenox (anticoagulant) because his PTT level was A LITTLE off. They also checked his weight to see if his dosing for all medicines may need to be changed. He had his 9 month check up and is 50% for weight, and we aren't sure for height. So, he is doing great! AND he as a preemie! Tomorrow I believe they are weaning a little of the methadone. So far all the weaning has been going well.

Tomorrow Riley is going to Harrisburg with my mom and dad for the day/night. Every year my dad takes part in the State Farm Show and I know Riley will just love it! I will miss her, but I am so excited she will be joining us in Pittsburgh. I am looking forward to her meeting Laci (Faith's sister) and hanging out with some of the heart families at CHP.

I wanted to remind you all about two events coming up in February to support Nolan's fund. One will take place in Danville, PA called Nolan's Heart of Steel Icicle Classic/Polar Plunge/Soiree held February 1. The other will take place in Williamsport, PA called Chili & Chocolate held February 23. Both of these are being put on by wonderful friends of ours who are trying to help out our little guy! I can promise you that both events are going to be amazing and FUN! If you don't know, Matt and I have the funnest friends, so come out and have a good time with us!

I am ready for bed! I hope you all are having a good week and staying warm! I think the highest I saw it get today was 7 degrees! Yikes!

ONE MORE DAY CLOSER!

#nhos
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