I forget sometimes, how fragile Julianna is.

The morning after I wrote my last post (the one that celebrated a cold-free winter that has allowed Alex and Julianna to spend precious time together), Alex woke up with a cold. A very mild one, but enough to make us employ the usual infection control protocol. Since I also had the tiniest of sore throats, I got Alex and Steve got J. From Sunday to Wednesday evening, I had no physical contact with my Julianna. I gave her air hugs and blew kisses, and I grilled Steve about their nighttime conversations.

Wednesday night, things were looking promising. My throat felt fine, and Alex was feeling better too. Maybe we could come together as a family again soon.

Then it all changed. Steve called me to the room just after I got Alex down. J had thrown up/gagged/retched/whatever it is you do when there’s no food in your stomach but stuff comes up. We think she has some sort of stomach bug, but it all happened so fast. She was breathing fast and hard and her oxygen levels were low – which means that she probably aspirated.

The night was OK. She had a fever but it responded to Tylenol. We’re back on oxygen and increased BiPAP settings. We’ll start antibiotics again today and watch her like a hawk. It’s all very familiar – and I hate it. Last night, I felt it again, the physical pain that comes when your heart hurts. She was doing so well.

Julianna is happy and playful except when she has a wave of nausea. I gave her a new baby Elsa doll as a bribe to finish a neb treatment, and she was delighted. Breathing hard, she still had the energy to comment: “She’s gorgeous! I love her headband…”


Our Julianna…the strongest and most fragile girl we know. We’re reminded again that we can take nothing for granted.


Please pray/send good thoughts. We want Julianna happy and comfortable.

32 thoughts on “Fragile

  1. I think of her and you all frequently during the week, and have added her to my version of my “War Room” prayer nook that I have never had before. Wishing you smooth sailing…


  2. Prayers for everyone. You all draw strength from each other,and endless prayers from so many that care. Jesus wrap Your loving Arms around each one in this family,as,only You can do.


  3. Sorry to hear Julianna wasn’t feeling well but
    happy to hear she is feeling better. My daily
    thoughts and prayers are always with Julianna as well as you, Steve and Alex.
    All the very best as always,
    Thursday, January 28, 2016


  4. Julianna, I love you! Sending good thoughts and many prayers your way. Confession: I have a “bad” cat. We are gong to have to home-kennel her for a month in the hopes of retraining her. Inspired by you, I have name it the Princess Palace Jail for Wayward Kitties. Hugs!!
    Susan Thompson


  5. I sense that you are required to live lifetimes in single moments. What a beautifully painful gift. It’s like the Christ model – on a fast forward loop. Birth. Suffering. Death. Rebirth… Bless you all. Thank you for sharing your lives. Your posts always cause me to pause and marvel in awesome wonder at the human spirit which can transcend all corporeal fragility.


  6. Definitely praying for Julianna and your family as well. You are all such inspirations for the world. I pray Gods protection and grace on J and you and your family!! As others have said, Julianna is a true hero and warrior!


  7. Dear Michelle,

    I am at the dentist’s office in Midland, Texas and just read the article about your sweet baby girl in People Magazine. I was so moved by your story, I immediately had to look up your blog. My heart hurts for you and that you are having to experience this. People can be so judgemental and cruel when looking from the outside in. I pray God comfort and guide you and your husband during this difficult time.You, Julianna and the rest of your family will be in my thoughts and prayers. I hope she gets well soon.

    Sending prayers and thoughts of love,
    Linda Clary


  8. Praying that things don’t get worse. May our Father also give you and Steve an extra measure of rest and peace as you care for Miss J.


  9. Your family is beautiful and Julianna is gorgeous! Sending positive thoughts your way and hoping Miss J is feeling better & stronger really soon! Thank you for sharing your family story with al, of us!


  10. Michelle,
    Your story was brought to my attention last month when we heard about the fundraiser at WCMA (our son takes classes there). I was curious and wanted to know more so began to follow your blog and news articles online. There isn’t a day that passes that I don’t think about Julianna and what a strong, loving, dedicated, beautiful family you all are. You’re all in my thoughts and prayers. Wishing Julianna a speedy recovery and good health! Stay strong ❤️



  11. Sending Julianna lots of prayers and love from Pedro, Sujin, and Jessica. Julianna is an amazing strong willed child, and I know she will get better. God bless her and your family.


  12. Julianna your beautiful little face and that smile when you feel so poorly is an inspiration to us all. Sending you a big hug and hoping so much that you will feel better very soon. You are such a brave little girl and I pray that you can be well. Love and hugs to you little princess and strength and hugs to your wonderful family. Stay strong sweetheart….and I love your new doll…how cool is she…just like you ❤ Love Jo in a very cold Hong Kong! xXx


  13. Not a religious person, but actually prayed that she will get better. She is for sure my hero for her bravery and for always smiling. I am learning a lot from Julianna.


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