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.
- 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,
- 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: 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…