Happy Easter!

Happy Easter weekend, Team Naaman! Naaman is slowly but surely heading in the right direction. Liver levels continue to improve, he has been needing oxygen infrequently, and belly is starting to go down. His belly had swelled as large as it was at the onset of his liver disease, but it was due to gas and displaced fluid. He’e been on a lot of diuretics and also has a vent for gas on his NG tube. Despite all of this, his little personality is coming back. We see some smiles and also some “NO WAY”s so we know he is feeling more like himself. In typical Naaman fashion, he has also started talking even more.  For example, when he was up at 4:00 a.m. and I was still lying on the couchbed in denial, he told the nurse, “Sssh, Mama sleeping bed.”  😂  I’m not sure if he just likes his Captain American cape and mask, or if he realizes just how much (more) attention he draws to himself when he wears them.

“Bye, ladies…”

To the delight of the female nurses, he sometimes chimes in, “Bye, ladies” or “Goodnight, ladies,” when they head out of the room.  This guy…

As we mentioned before, we have a larger room on the unit that is typically used for transplant patients who would be here for several months at a time.  Fortunately for all parties, no one is slated for a transplant soon, so we shouldn’t be booted from our luxury room before his eventual discharge home.  Check out all this space:

View of the luxurious room

We just received great news that there is space at the Ronald McDonald House across the street for us to stay at this weekend. Even though Naaman can’t go over there, the rest of us Johnsons can stay there, meaning it’s far easier to just go back and forth rather than make the drive down. That means for example, Daddy could do some work (or take a nap) in our RMH room while Nadine hangs at the hospital playroom with Mama and Naaman.  Then we can switch and bake cookies in the giant RMH kitchen, play in their playroom, watch movies in the big shared living room, etc. Thanks to any and all who have ever donated to Ronald McDonald House! (Yup, it’s that box you see inside McDonald’s or in the drive-thru line for your extra change!)  Our Easter will be as “together” as it’s going to be.

4 thoughts on “Happy Easter!”

  1. Happy Easter Johnson family!! May you be blessed this Resurrection Sunday with God’s healing grace and love surrounding all of you. We are lifting you up in prayer continually and want you to know you are loved so much by God, us, and so many others. Love, hugs and kisses being sent your way,
    Titi Maggie and Tio Wil

  2. Glad to hear Little Naaman is feeling a bit better. He was quite responsive to me an Nonni last weekend, when he had the strength. I am also happy to hear there is room for you at the Ronald MacDonald house, especially for Easter weekend. This will make things so much easier for you all.

    The Ronald McDonald House Charities of Rochester, NY are one of our top recipients of charity from the Monroe District Freemasons and Shriners.

    Love to all!
    Papa

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