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April 11, 2019

Julia had a good day today.  Vitals are all fine for the week after chemo.  We don't think she threw up at all today.  So other than some mucus gags, she's doing GREAT with vomiting!

We met with the nurse who's in charge of sending her home today.  She has an official title that I can't remember, but her job is to make sure everyone is working together to get us trained, so we can take Julia home in few months.  They would like to start with fixing her sleep schedule.  Everyone is super happy with her progress and all kinds of therapists want to be involved with her daily - PT, OT, speech, music, child life, pet, etc.  But the nurse keeps seeing in Julia's file that they stopped by and leave because she was sleeping!  And they're all pretty sure she will only improve faster with this sort of interaction and strengthening.  

So they're going to work on giving her sleepy meds at times that make sense (not 10pm when she's used to going to bed at 6am).  And they will set lights off and lights on schedules.  It will be a slow process, but at least progress toward being up during the day.  Child Life will also get involved with her trach changes so we can try to distract her and make them less traumatic.

Speaking of trach, they deflated her cuff for 30 minutes today!  The cuff is just a balloon that blocks the airway to the mouth, so all air is forced to move through the trach (I believe this part is used if they required a vent.... not 100% sure on that).  But this cuff makes it very difficult to vocalize.  So since she's mostly off the vent during the day, they want to start deflating it for a bit to see how she does.  She did GREAT!  No words yet, but definitely some noises.  They say that's the start.  I'm so hopeful in a few days we can get some words! 

Oh, and she's starting to do the CUTEST THING!!  This morning Reed texted saying he thinks she's pretending to sleep every time a nurse comes in.  And about 30 minutes later he texted back and said that's exactly what she's doing!  Apparently the respiratory therapist came in and Julia immediately shut her eyes (like a kid does when they're pretending to sleep), and stayed that way the whole time he was in, and as soon as he left, her eyes opened and she mouthed 'dada'!  What a smart little girl!  How did she learn such a normal kid behavior!? She certainly didn't do it when she got admitted in October... and since then she's spent the majority of her time sedated or unconscious.  So that's just super awesome!  

And in passing, the nurse just mentioned, "... since Julia is developmentally normal...".  That was AMAZING to hear!  Many people have said things like, "We're happy with her progress...", and, "She's doing really good CONSIDERING the stroke..."  But before today, no one has actually said the consensus is that there is no neurological damage or deficiency. And when cancer on the brain stem squeezes so hard it almost kills you, AND you've have 4 brain surgeries, AND a brain infection, AND a stroke, AND a several-week period of unconsciousness... the fact that she ISN'T experiencing developmental issues right now is a miracle in itself.   So great day today.  Hopefully some good progress with seeing all the therapists and deflating the cuff!!

<3 <3 <3


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If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3

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