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May 29, 2019

A decent day.  POSSIBLY slightly less secretions thanks to medicine (too early to really tell - and PT coughed up a bunch).  They continued to wean her nerve pain medication.  Her blood counts bottomed out a few days ago, and are slowly starting to recover.  So she should be feeling better over this next week.  She did her two breathing sprints with the HME and did great =) 

Her big event today was PT, and she did AWESOME! I put four short clips of the session together.  She did really really great!  The progress from the last floor session, I think 2 weeks ago (a short break during chemo administrations) is noticeable!  

You can see the therapists have her sitting on both the floor and a stool.  They have her reaching her right arm at all angles (you can see her little hand shake with effort at one point!).  They attempt to get her to twist to her right.  She doesn't care for that, but she does it.  What they were MOST impressed with is her leaning all the way to the ground to get something AND GETTING HERSELF BACK UPRIGHT!! This is such HUGE progress from barely being able to support her own head a month ago!  You can see she uses her hand on her knee to push herself up.  She struggles sometimes... but it's just so sweet.  She's DETERMINED to make this happen!  You just want to swoop in there and lift her up... but this is what she needs <3 And there's a good shot of her throwing arm!  She has pretty decent aim and even chucks one right at Reed (then giggles).  

So that all was a very successful ~45 minute session.  She needed several cuddle breaks - she cuddled with the therapists and with daddy at different points, before she was ready to go again.  But everyone was cheering her on and they're all SO HAPPY with her improved strength and willingness to interact!

After her awesome PT session she took a like.. half-day nap.  Now she's awake and coughing up SO MUCH GUNK.  It's great for her - getting her moving really loosens everything up.  But she's otherwise content =) 

At home, I finally cleaned out my cupboard.  Between work, driving, hospital, and Gabriel (having or visiting), I've had like... no 'free time' at home.  In months.  Yesterday I found myself with some free time so I figured I'd go through the food in my cupboards. It was a very unexpected roller coaster of emotions.  I finally threw out all the food I last bought for Julia... stuff that expired in early November.  All her yogurts, and crackers, and snack bars...  Instantly it made me sad... remembering the toddler I used to have running around the house.  But then it made me REALLY sad thinking about "what should have been".  I almost had to do this with her gone.  Forever.  And then I got even more sad thinking about the families who have recently lost a child to cancer, and imaging their final clean up...  And then I had such a high high realizing I'm making room in my cupboards, and stressing over home modifications and re-arrangements, BECAUSE SHE'S COMING HOME.  We don't know when, but she's coming home!  

The ambush of emotions was so intense I just sat on my computer the rest of the night.  I had plans to be super productive and clean... and I didn't get further than the cupboard.  It wore me down.  Though I DID have to switch sides for the toddler food... it didn't feel good to replace "Julia's section" with all the food for Gabriel.  So I moved his section to another side.  Silly... but it helped a bit.

I didn't get a good picture today (but a great video in the comments!) so I looked for a picture from last May, and I noticed a theme... she was ALWAYS laying on Gabriel!  She just wanted to be connected to her baby brother all the time!  So I put a bunch together <3 



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