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March 18, 2019

Julia is sleeping comfortably right now.  Vitals: heart rate 120s, ET high 30s, BP 98/59.  She's had a few barfs today.  They are still playing with her nausea meds, and how best to to give her her regular meds without upsetting her stomach.  She has the smallest fever (100.1) and they are keeping a close eye on it since she's at her most vulnerable.  Physically she looks really great - her color is good, her swelling is decent... she's getting a bit of dry skin on her legs so they're looking for a more effective lotion.  It doesn't look raw, just a little flaky.  And she's definitely starting to lose her pretty eyelashes, at least on the bottom.

They've also done another good step down on her Morphine.  The goal is to totally get her off Morphine and Ativan (which will end up being complete removal of all sedation).  They want her to be fully alert and to really focus on gaining strength and restorative resting (not drug sleep).  They are keeping a close eye on withdrawal.  They have a score chart of symptoms, and she has a couple, so they're watching carefully to see if a rescue dose may be required.  So far she's tolerating everything well.

She's had some good hand movement today.  She's REALLY trying to lift her hand and move her arm around.  If someone lifts her hand for her, she can really do some great things!  In the video, she's pointing at noses and doing high fives pretty well!  You can tell her hand is really weak and sometimes it flops, but she's definitely trying =)  We also got a few good laughs out of her... mostly by pretending her stuffed animals were beating us up. Speech Therapy was finally involved today.  They read her a book and did their initial assessment.  (They didn't put notes in her chart yet, and Reed was asleep, so I don't have full details).  But they would like to be involved several times a week.  (Yay!) Child life is also getting involved to figure out what sort of interaction she can have, like with some toys and gentle strengthening interaction.  

We talked with the first home care company, and I guess we have another meeting scheduled for next week.  We're also interviewing the first home supplier company in a few days.  They are really getting things moving - it's a ton of information really fast.

Oh, and since people asked - I did end up going to the ER last night.  Whatever this swelling is, started to make it difficult to take full breaths.  They did another full workup of labs (after stabbing me 8 times!), an EKG, an X-ray, and a CT scan with contrast.  They said everything looked fine and they sent me home.  So far no idea what's going on.  I just feel like I have a 6-inch wide band of fabric wrapped tightly just under my boobs.  So, not quite high enough to be chest, not quite low enough to be intestines.  All around my body it feels like a corset - swollen, hard to breathe, hurts to bend or press... no idea.  Maybe more tests this week, but that's all they had for now. (It is TOTALLY tolerable though - just very uncomfortable and the unfamiliarity of it makes me nervous, that's all.) [Edit: everyone is saying gallbladder! I will call my doctor back tomorrow and ask what tests we can do to take a look. Thank you!!]

Short update today (it's 11:00 and I was playing a board game here with Reed and forgot to update!)   Video tonight of Julia moving that hand around <3 <3  

YouTube Video:

. . . ******************************** ********** Official Links *********** (These are here because of scammers) ********************************

Julia's *only* website: Julia's *only" Facebook page: Julia's *only* GoFundMe: Julia's *only* official fundraisers:  T-shirts - | Jewelry: Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

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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