Energy

Thank you for all of your prayers and good thoughts and love. I know I don’t respond, but we read every single one – and it helps us more than you know.

Updates:

  • We’re still pretty sure J had a small aspiration event. She’s on antibiotics, and seems to be responding well with a bit of extra respiratory support. She hasn’t been able to tolerate aggressive respiratory treatments, and that’s OK – sometimes it’s better to not stir things up. The fact that she’s comfortable and stable is amazing. We have definitely seen it go the other way (unstable despite aggressive treatment), and this is much, much better.
  • Not sure what caused all of this in the first place (the throwing up part). J seemed more comfortable after we held her feeds yesterday. She got some Pedialyte to help prevent dehydration, but she got very little in the way of calories. Her feeds started up again this morning (at a lower rate), and so far, so good!

Now the more important (and interesting) stuff – how is J really doing?

Though she possesses a body that is unable to produce much volitional movement, our Julianna has a ton of energy. The best kind. You can hear it in her voice (always confident), see it in her eyes (sparkling) and feel it in the things she says (astonishing, funny, right-on). When we try to coax her to sleep, she resists – often by shaking her head back and forth to show “my energy.”

Yesterday, she definitely had less physical energy. Instead of enacting her own toy drama, she watched it on youtube. (Would you believe that there are dozens of youtube videos with Elsa/Anna/Barbie/Ariel figurine drama? They get kidnapped, fight over ice cream, learn to swim…I think J’s dramas are more entertaining, but I’m probably biased.)

In all the important ways, though, her energy – what makes her Julianna – was still there. For example,

  1. J’s Pulse ox (machine that checks O2 levels) goes off. Her sensor has come off. It’s LOUD, and it brings me back to PICU days.

M: I hate that stupid pulse ox!

J: Mom….

M: what?

J: It’s not nice to say “hate.”

M: But I do. I hate it when it beeps at me.

J: It’s not beeping at you. It’s beeping at everyone in the room.

 

How can I argue with my calm, reasonable five year old who knows it does no good to waste precious energy on meaningless noise? A girl who has no concept of self-pity? I can’t, and that’s what helps me go on.

 

2) Julianna is half asleep.

J: “Mom, exercise”

I start moving her legs.

J: I’m walking…

M: Yes, you’re walking. What are you walking on?

J: soft grass…there are flowers.

M: What color?

J: Pink…I kick them.

M: you kick them?

J’s eyes open. She is surprised.

J: Not kick – pick!

M: Oh right, you pick them.

J: I would never kick flowers….

She closes her eyes again and we talk about the beautiful bouquet of flowers she picks while walking on the soft grass…

IMG_2706

After her bath, J declared that there would be a party and asked to put on one of her party dresses. We compromised — this is her sparkly party t-shirt. 

17 thoughts on “Energy

  1. Michelle, thank you for the update. So glad Julianna is feeling better! She is an amazing child — makes me smile and laugh! And you are an awesome Mom. Prayers, hugs and love.

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  2. I have 4 children, my 16 year old son with a bone disease, he will eventually need hip replacements, so I understand the worry of having a child that has pain, it hurts my heart so much, J is a miracle in my heart, I feel she will be a miracle story, and she will live many more years! I am her cheerleader, I pray for her and your family. She is always in my heart and I look for updates every day. I love her imagination, her personality, her awesome heart. you guys are amazing parents, and she has an amazing brother as well. Thank you so much for sharing your story

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  3. There are millions of us who follow her story with amazement. You are an incredible family and she is a role model for every one of us. our thoughts and prayers are with you. Linda

    Sent from my iPad

    >

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  4. You and Steve are amazing parents, so strong when you must be so afraid inside. And I am in awe of Julianna’s incredible wisdom and sense of humour. I know you treasure every single second with your wonderful girl. Thank you for sharing the highs and the lows with all of us, complete strangers who are on this journey with you. Carol

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  5. Aw! Haha reading those convos .. Julianna sounds extremely mom-like over you heheheh that’s so cute! Like a “-_- you Do Not hate …” & then you’re the kid self that goes “BUT I REALLY DO” & she’s all like “it’s affecting EVERYBODY and not just you so don’t fuss”. Hahahahaha I love Julianna’s mom-self, the role reversal is cute! (& also, that her usual bossy princess self is back, is good!)

    also, yes – Pick flowers, because Julianna would never Kick flowers. I like that. 🙂

    But in the bigger picture of a these Julianna-isms (I’m going to call these Julianna-isms from now!) … I hope the upcoming book manages to weave in a collection of Julianna-isms, or at least have a section of them! These are so gem-worthy they deserve a book in their own right haha.

    Keep going Michelle & Julianna, hoping the weekend brings you more happy kind of exciting happenings! ❤ x

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  6. So pleased to hear Julianna is feeling better today and WOW those conversations! She really is amazing… a true, beautiful little Princess inside and out! Stay strong sweetheart ❤ XXX

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  7. M – I’m so sorry I missed your January 28th post and so relieved to hear that Julianna is doing better. Please know that Julianna – and you and your entire family – are always in my prayers.

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  8. I am a loss mom. All three of my babies have died – two in pregnancy and one after birth. Julianna’s selflessness, acceptance of life and belief in heaven give me so much hope and strength. So glad to hear this little star is doing better ♥

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  9. Tomorrow we will go to church and pray for Julianna. We always have her in our thoughts and prayers. Sending love from Pedro, Sujin, and Jessica.

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