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May 26, 2019

Julia had a grumpy morning, but OK afternoon.  Counts are low, but vitals are fine.  She had her gown changed FOUR TIMES from so much drool/mucus.  They are starting her on glycopyrrolate which decreases saliva production, so hopefully that will help a little bit.  

They already increased her HME breathing springs to THREE hours at a time!  So she's increasing by the day.  She did great today, even through all the excess snot.  She even took a short nap while only on the HME (without the typical vent support she gets while sleeping) and she did totally fine!  So they're just going to keep increasing it, and have her continue to rebuild those breathing muscles.  She doesn't care for the noise the HME creates, but she LOVES being disconnected from the vent.  

The nurse even said she got an ON PURPOSE hi-five from Julia's left hand when the tubing wasn't there!  I didn't see it, and couldn't get her to repeat it, but that's really awesome =) We're still looking for evidence of purposeful movement / eventually fine motor control on that side.  (For Julia's new followers - in December she developed a brain infection through one of the surgical site, and it caused a stroke [that's the big bulge she has on the left side of her skull - an interior shunt to relieve pressure if needed].  After the stroke, her health declined rapidly from the cancer and she went into some sort of coma... so she is JUST now starting to rehabilitate her left side from 5 months ago!)

Any time Julia barfs or disconnects her feeding tube to water the bed, they have to change her bedding.  It used to be a LONG process with her delicate neck, but starting about two months ago, someone (a nurse or Reed) could just gently lift her completely out of bed and someone else would change the sheets.  Today, Reed lifted her up for a change and she squirmed around in his arms and then full-on monkey hugged him!  she wrapped her right arm and both legs around him and wouldn't let go.  So he gave her LOTS of standing hugs, and she just bounced her feet around all content.  She shook her head 'no' every time he asked if she was ready to go down <3 

Picture tonight is Julia grabbing her foot!  Such a silly simple gesture, but she hasn't been able to do this since surgery on November 17th!  So over 6 MONTHS of not being able to grab her feet like all littles do.  You can tell she's enjoying her re-found ability <3  We visited with baby brother today, and Julia was so happy to see him, as usual.  She makes her big "O!" face when she hears him - it's always such a nice surprise! Julia was trying so hard to roll toward him... she wants to get to him so bad.  So they hung out for just a short while and then she couldn't keep her eyes open anymore and took a snooze.  I have a super short video of her VERY EXCITEDLY saying hi, and then the nurse had to do something and I forgot to take more (pardon her snot).

And today Gabriel and I went on a hike with Manny and Megan.  For starters I nearly died.  It was a least a million degrees, and it was 90% uphill.  But Gabriel had a great time <3 Manny even sung him to sleep while walking through the meadows =) So I'll put a few of those pix in with Julia's toe-grabbin!


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

Julia's *only* pages:  Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers:  T-shirts: Children's Book: 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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