Million Miles a Minute

I can't believe tomorrow is already Thursday. Life at home goes a million miles a minute. Work is always crazy and then there seems to be something going on at night. Next thing I know it's almost Thursday, which is the night that I prep for my week in Pittsburgh. However, this weekend I will actually be home! Saturday I have an event for work that will be held at the mall; and then Sunday is Chili & Chocolate, that will be held at Benjie's in Williamsport from 1 to 5 pm. I am overwhelmed by the support Nolan has received from the Lycoming county communities, as well as the surrounding communities of Danville and Bloomsburg. I do not even know how to express my gratefulness. I just hope everyone knows how much Matt and I appreciate all the support.
the second benefit for Nolan,

Nolan is doing amazing. He had an echocardiogram and EKG done yesterday, both of which came back perfect. Monday he had his new picc line placed, which went well. Our transplant coordinator suggested us to start home meds, meaning that the nurses basically have us administer meds on Nolan as if we were at home doing it ourselves. So, that started today and Matt said it is going well.  I will have to be taught once I get out there. Physical therapy is very happy with Nolan's progress, especially with rolling and his ability to transfer weight. Occupational therapy and speech continue to work on eating and swallowing. This will probably be our biggest hurdle, so we are going to look into doing intense therapy while staying at the Ronald McDonald House. He is currently up to his goal feeds of 135 ml and hour...maybe 6 times a day (I think)? At night he has 56 ml of continuous feeds. I am doing to say it - the continuous feeds at night are pretty nice. :) No having to get up in the middle of the night for a bottle!


That is really where we are at currently with Nolan. He will be receiving his second biopsy Friday, and early next week we will be discharged to the Ronald McDonald House where we will be for about 4 weeks. So, if all goes well, we will all be under one roof by end of March! So hard to even imagine!

With that said, I am going to have to break Riley's habit of sleeping with me. There's no way I am sharing a bed with both Matt and Riley. Some how she seems to take up the ENTIRE bed!

Hope everyone had a great day - and I would love to see you at Chili and Chocolate on Sunday, February 23!!

#nhos
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