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May 27, 2019

Updated: Jul 9, 2019

Julia had a surprisingly good day!  I say surprisingly, because Reed came home last night to spend time with Gabriel and catch up on some sleep (pretty sure he slept 11 hours straight).  It's the first night in a long time he wasn't there with her, and she did great!  The nurse said she slept the best she has in months, she woke up happy, and took TWO great naps before we got back =) The nurse of course knew we weren't there, so she was with her a ton while she was awake.  

But oh boy... when we got back into the room we had ONE HAPPY BABY.  I took many videos, but it's late so I probably only have time to put one up rather than make a compilation.  She was pulling Reed into hugs with her little hands, and even grabbing his face and pulling him in for kisses.  Mommy got love too... but nothing compared to her daddy <3 

The nurse had Julia spend a lot of the day sitting up pretty straight in bed, and she did really well =) She's starting to enjoy watching her cartoons from the more up-right position.  It's not fully up, but definitely getting closer.  I've talked to a few adults who have had the upper spine fusion surgery, and they said their heads felt like bowling balls on spaghetti necks.  It was just so uncomfortable (after the pain went away), and it felt like a monumental task just to hold their head upright.  So that might be what Julia's dealing with, but she's clearly getting better with her neck strength and control.

They weaned another step down on her nerve pain med.  Again, no one believes she's in any pain (she's been off the Fentanyl / Morphine for a while now), and the nerve pain was a "just in case" med when she was in that coma-like state.  So now they're just slowly getting it out of her system since she shows no sign of being in pain.  They started her on the new med to reduce saliva.  No change yet, but she just started today so they're going to give it a while.  She was on her HME sprint for a good 2 hours earlier AND napped through it again (and did great!), and she's in the middle of her 3 hour sprint right now.  Everyone is super happy with how she's handling that.

Reed participated in the trach change today.  He did great, as expected.  He held the trach, pulled it out, and then reconnected the tube.  The respiratory therapist did the other role (untying strings, putting trach in, testing for good breathing).  I... managed to hold the phone mostly straight while recording it.  Hopefully I can watch it a few times and desensitize myself... but it's really awful.  I'll put it in the comments below... but it's not a fun video to watch.  And then after all this, she still needed new strings put on, which I attempted to do.  So the gagging and crying and swatting and barfing continued.  Ugh.  I want this trach out so bad.

So two videos in comments - a sweet one with daddy hugs, then a not-so-sweet trach change.  Picture is cuddles while watching Paw Patrol.  The pose reminded me of a picture from when she was a baby, so I added that (don't worry - they weren't actually sleeping in bed like that).  And Gabriel had a BIG DAY OUT with Aunt Charlene <3 

YouTube (daddy hugs):

YouTube (trach change - warning - not a pretty video (not gory, just hard to watch)): [Edit - video removed per request from CHOP 7/9/19 - I accidentally got a nurses badge in the shot]

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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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