endurance

He’s getting there!

Over the past two days, Ruben has peed out 5x his normal blood/fluid volume. (that gives you a sense of how puffy he was) He is now looking more and more like himself – which is a joy to see. Their plan is to close his chest tomorrow in the early afternoon. Woohoo!

We can’t wait to see him wiggle again – though that will be a few more days yet.

The Valentine’s Day decorations are starting to take over the PICU …. cheerful hearts are everywhere, electric candles are lit. We’re the only ones lucky enough to have a world map …. (made the other day by Gavin Nephew, 4 yrs old).

We’re hanging in!

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21 thoughts on “endurance

  1. i had a dream that ruben emerged from all this knowing how to walk 🙂 i’m sure he will be a wise one! been thinking of you all lots, sending lots of love!
    jen

  2. Sending all the love I can your way. All of your collective strength just amazes me and it is clearly being channeled into Ruben who is championing through all of this so well.

    Many hugs and happy peeing.

  3. you guys are now experts on endurance. so glad things are going well and that Ruben is getting back to being himself. and nice map!! love you all, anne e

  4. To Master Wiggler Puffernot,
    Good going on the peedumdiddle-tinks! Soon you will lift from your slumber be back to a blumbler a burp and chirp and smile like sunshine. Hold on, Mom and Dad, Grands and Aunties, Uncles and cousins your endurance is gargantuan and will soon and surely be rewarded in the greatness of simple tussle-nussleings!
    Love,
    Penny

  5. it sounds like he’s doing great–we hope you guys are managing to find a few pockets of relative calm–we look forward to seeing him back in brooklyn soon!–love,b/a

  6. Hello Ruben and Team,
    I’m so glad to hear that the fluid is leaving and your chest will be closed up tomorrow. I believe you’re on your way home, and I believe you’re on your way to a good life. Love, Albert

  7. Great. As ever, much much love and strength to you all – we’ll be watching out tomorrow for the next update and maybe the first wiggle?

    Love,Felicity

  8. Hurray Ruben! what a great Valentine’s gift, to tuck your sacred little heart back into your chest as you continue to heal, pee, and prepare for full body movement. We are thinking of you day in and day out. All love, Sarah & Felicia

  9. Slowly but surely,eh! Let Ruben’s be the most cheerful and rythmical heart of all,and what an appropriate day to celebrate the fact. Looking forward to hearing about the grand re-awakening.
    Luv Patrick

  10. magical marathoners you all are! keep absorbing the infinite love & moving it through!! happy valentines day to team ruben ❤ matteo

  11. Glad to hear things are going smoothly. I’m thinking of Ruben running in the NYC marathon when he grows up, with a strong and healthy heart.

  12. What a perfect day to have Ruben’s heart, filled with the love of many, sealed back up, tucked away safely! Will continue to think, pee and pray for Ruben!! –Rosa

  13. Happy heart day! We are your very own (and very large) circle of cheerful hearts and electric candles – rooting for you, standing with you every one of these hard-to-be-patient days, surrounding you with love.

  14. we’re not far. let us know if you need anything. in the meantime, we’ll be peeing for ruben. lots of love today and everyday.

    d & s

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