Prayers Please

Writer’s block has settled in. It’s been frustrating, but good because it reflects our stable, routine lives of late. Boring is sometimes marvelous.

It’s all changed, so here’s an update and request for prayer.

Julianna’s feeding tube (the G-J) tube stopped working tonight. Without it, we have no way to feed her or give fluids, so it has to be replaced soon — like, tomorrow.

This is not so simple. It means an ambulance ride to the hospital (we don’t have a way of transporting her for any long car trips) and getting it changed with interventional radiology. We’re coordinating with our hospice nurse, and she’s advised us to stay home tonight and let her make calls first thing in the morning.

Julianna asked if she’ll need an IV, and I was honest: maybe. There were some tears, and she’s scared. We promised her all kinds of toys (and maybe some visit from her old hospital friends), and she promised us that she would hold still so that they won’t have to put her to sleep.

G-J tubes don’t last forever. J’s lasted over 18 months, which is probably some kind of record. We knew this would happen one day, but as time stretched on, you forget. You want to believe that the happy, stable, good times will last forever.

Please pray for:

— Safe transport to and from the hospital. (J hasn’t been in a car for more than five minutes at a time for the last year). 

 — that they get us on the schedule early tomorrow and it’s a quick and simple change

 — that J doesn’t need an IV. Or if she does, they get it the first time

 — that this G-J works just as well as the first.

Thank you!!

 

31 thoughts on “Prayers Please

  1. You are in our prayers often, but especially tonight and tomorrow. Your whole family is dear to our hearts.. Please let Miss J. know how much she is loved and prayed for!!!! With love from the Greisz family!

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  2. Prayers being sent up..

    Please just hear our Princess and her mom and family and all of us who care so very much and give her safe transport, early procedure time, and a very long lasting G-J that works even better and longer.

    🚑 💨 🚔 🙏

    And please know just how much we love this child.

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  3. I will certainly pray for your daughter, you, your family, the doctors, the nurses, the driver and all involved in her care as well as the things you asked. I can tell you believe in prayer you are very specific 🙂 I’ll ask my angels to give her a quick visit, they love that take care of that little princess, prayers all go better than you could imagine 🙂

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  4. Extra prayers going out to all of you. Ryan’s asleep, but I’ll tell him to start praying first thing in the morning. J – you’ve got this! Mom – we’ll be anxiously waiting for an update.

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  5. My family and I are all praying for Julianna. Praying that all will go smoothly. Stay positive, stay strong. God is watching over you. ❤️

    The Sternthal Family (WCMA)

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  6. AME, (pronounced ah-meh), when I get writers block often I will write the ending or some point there about. The mentally back up while imagining what it will take to get to that point. How do you want this tale to end? Write the ending then work your way back. It is in you to fill the remaining blank pages with ur desire. The PEN is in your hand AME. (Ame is from a bible word in the orig language. It translates as MOTHER AS THE BOND OF THE FAMILY) Good work mom and dad!

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  7. Prayers all nite and day from the heart!……please, when the dust settles maybe a quite one liner update…..love to you all!!

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  8. God bless you and keep you. God’s face shine on you and be gracious to you. God look upon you with kindness and give you peace. Amen.

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  9. I will be praying for a quick trip and an easy painless solution. Juliana will feel the love of all of us praying…..hugs to all of you.

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  10. Sending big hugs and prayers that all goes smoothly for Miss Julianna. She is an amazing, sweet little girl and I hope she’s back home quickly!

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  11. Extra prayers for you and your family today. We love you all; you have blessed us more than you willever know by sharing your story.

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  12. Lord ..Hear my prayer for our precious Julianna and her family. Grant them a safe trip, a seamless procedure and no IV. Show them our love and that we are all gather together sending them positive thoughts and lots of hugs and prayers. Lord…please hear my prayers.

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  13. So many heartfelt thoughts ,good wishes and prayers for Jullianna and family…..You all have to go thru this procedure…..Hoping it all goes well and that you are all back home soon….Stay strong!

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  14. Thank you, Michelle for letting us know. Please keep us updated when you can, I agree with 1 of the post a “one liner”-(Julianna is fine now.) would be so great to hear.

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  15. Not many words of my own, so I’ll just (re)use some that I’ve given her before, from the poem I got for her at the craft fair for Christmas –

    You are a peerless warrior princess now
    Brave in your fight
    And radiant in your struggle
    For you are my bold & brazen beauty

    … so keep on keeping on being brave (choosing to keep still when there’s gonna be needles is Brave! Especially when it’s scary), radiant & beautiful, warrior princess! Sending all my love & prayers ❤

    M: what you said about things being out of control, which we don't realize until Life brings a reminder, is so true – often it comes in the form of the illusion of financial/employment security, but in times like this – the illusion of health security. But keep on keeping your eyes on God, because in Him all things hold together – & He holds your family even now. Big hugs to you & J, both!

    Also +1 on the one-liner update, just to know J is safe & well.

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  16. Hi Michelle,
    You don’t know me, but I’ve been following your blog since I saw a headline on the Today Show awhile back about your family. I can’t begin to relate to what your life must be like right now, but I am a mother of two and can only imagine. I live in Sammamish, which I believe is in your vicinity.
    Anyway, please know that each time I read one of your posts I pray for Julianna and your whole family. I see God holding all of you in peace and comfort and affirm the good and healing for all.
    A trauma that occurred involving one of my children brought me to my knees in every way possible once, it’s nothing like you are going through, but I feel I’ve glimpsed how out of control things can get (and then how God steps in when I do let go completely), and it will never leave me. The overwhelming sense of pain and peace at the same time in the aftermath changes life forever. Maybe that’s why I’ve followed your family’s story and feel a connection to your writing?
    Either way, you are all in my prayers, and I thank you for sharing the joy that Julianna is!
    Alison

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