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August 7, 2019

Chemo round 10, day 2.  She has been surprisingly happy! ... and awake.  Chemo is making her sick, as expected, but she seems to feel better immediately after.  And she gave the longest mama hugs today!  I think she had a grip for like, 10 minutes.  It was a long drive down here with traffic and I thought about just taking a nap since she didn't want me to go anywhere <3 But vitals are fine and mood is fine, so she had a pretty good day.

I wanted to mention a few more highlights from her awesome PT session yesterday!   --- She supported most of her own weight in the crawling position (first time)

--- Both hands want to flip over (going palm up), so that needs to be constantly corrected

--- She did most of the work pushing herself back up to sitting

--- They had her in a standing position to give Reed a hug <3 Her legs clearly remembered what to do, and she pushed her weight into the floor.  Her butt kept like, falling backwards, so there is some core strength (or something) missing.  But they seem really happy that she appeared to WANT to stand.

We also asked about her neck.  We've noticed in pictures and videos that she prefers it leaning to the left.  Of course it's difficult to not jump to "tumor", since a stiff neck is the only sign she had at the beginning.  I'm noticing it more now, but looking back through pictures, she seems to have been leaning that way for several months.  The doctor confirmed she's schedule for imaging "soon" (I assume after this round of chemo).  They said that should this be tumor growth, nothing would change with treatment.  Anyway, no one is suggesting that (other than my paranoia). She's had imaging since we can see it starting in pictures, and nothing is growing.  I assume, based on my limited medical knowledge, that this is an effect from her stroke.  Her entire left arm and left shoulder is weak, so it doesn't seem like a stretch that her stroke weakness could extend up to her neck.  Especially with her neck being weak in general, due to the spinal fusion, which she hasn't properly recovered from.

Anyway, PT is going to carefully review the new MRIs (in a few weeks) and determine what all they can to do help encourage some neck strength.

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I still need to put on the child-proof case, but Julia's new iPad is down here and ready to go =) She got to FaceTime with Charlene and brother, and Alicia and her kids.  She was VERY happy.  (...And equally as upset when they had to hang up.  She tried to communicate in every way she knows how that she didn't want them to go!)  She was SO excited, that the nurses in the hall got concerned with the monitors showing her sudden 180s heart rate.  Her nurse said, "Don't worry, she's just FaceTiming with her brother" <3 <3 

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I've been made aware of a situation surrounding Julia's event at Freddy's and people of questionable moral character.  I'm awaiting their response before sharing with Julia's followers.

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Video in comments of HAPPY Julia on FaceTime!


YouTube: https://youtu.be/e1-3axJ-tsA

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. ********** ~~ Julia Adams ~~  ***********    ************* Official Links ************* *************************************

Julia's official pages:  Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer


Julia's official fundraisers:  T-shirts: https://bit.ly/2MQc0lF |  https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i

Tumbler: https://tinyurl.com/yy6oamph

Car Magnet: https://tinyurl.com/y4nxr3lr


Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd


Chordoma Foundation: www.chordoma.org

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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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!