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February 22, 2019

An uneventful day for Julia =) Her vitals are nice and stable: heart rate 120s, ET mid 40s, BP 115/88.  No concerns.  She's very tired, as expected.

She has continued to be alert!  The pic today is of her VERY CLEARLY watching cartoons out of that one eye, and you can't see it, but she's petting tiger <3 

Two pretty awesome things medically today.  First they did a "sprint" with her vent.  They have been reducing the assistance over the last few days, so today they turned it off completely.  She was on room air (no extra oxygen) and no vent assistance (no guaranteed breaths).  They kept it like that for 4 hours as a test, and she did GREAT!  The put her back on low assistance, just because that's the weaning off steps apparently.  They had no concerns at all with her breathing totally on her own =) 

They likely will not be removing the trach any time soon, just because she's at such high risk for infections and complications... it's much better to have it in.  BUT, they could possibly cap it at some point, so she could be disconnected from the vent, and hopefully learn to talk around the trach.  It will be the most awesome thing ever to hear her little voice again!  

But I'm getting ahead of myself.  We're not there yet, but she did AWESOME with her own breathing.  So baby steps!

In addition to that, Reed texted me out of the blue and said she finished her first day of PT!  I had no idea they were even looking into it!  But she had her first 30 minute session today and she was EXHAUSTED.  They mostly did an evaluation - testing range of motion and stuff.  They were happy with arms and legs, but she lost quite a bit in her feet (they said to be expected having been off of them for 3 months; and for several weeks after she was put on hospice, they didn't bother with the braces).  So after that session she was zonked out for many hours.  And the time she managed to stay awake for cartoons, she just did biiiig yawns <3 

It just makes me SO HAPPY that she's doing PT.  This is where we left off.  This is what we were doing in the end of December, right before things just went horrible.  This was the plan.  She had just started PT, and she was getting ready to start chemo.  Now I feel like we're back where we need to be!

I didn't get to see my princess today.  We've been setting up for her Beef and Beer Fundraiser ALL DAY.  We are just in shock at all the donations - it's CRAZY the amount of support Julia has from all over.  So many businesses and individuals donated.  The owner of the venue said she's been doing raffles for years and years and has never seen this many donations.  So many friends and some of Julia's new Facebook friends(!) showed up to help setup.  It's going to be such a wonderful event tomorrow.  And it's going to be a HAPPY event!  Because.... something is going on with Julia.  And it seems to be in the right direction.

But I am exhausted from being on my feet all day and rearranging stuff.  I kept an eye on the clock knowing I needed to get out of there to get an update together!  As soon as I post I've got more last minute stuff to do.  And I'm REALLY looking forward to sharing pictures of Julia's event tomorrow <3 

. . . ******************************** ********** 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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