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June 18, 2019

Another good day for Julia, barring a short time in the afternoon dealing with nausea.  Heart rate is back down and all breathing vitals look great.  Blood counts are rising nicely from chemo. She slept a lot again, but not all day like yesterday.

Therapy today was speech.  They got her in a chair with markers to keep her happy, and that worked reasonably well.  She continues to have absolutely no interest in apple juice =( But after a huge charade of, "MMMM! Look how much DADDY likes applesauce..."  Julia eagerly agreed to try some... you know, since it's daddy's favorite.  So that was huge progress getting her to willingly accept something.  She immediately drooled it out so didn't even get a chance to swallow, but it was a start, and speech therapy seemed happy.  

Other than the swallow testing, she colored for a solid hour, and they worked with the picture-sound board.  Their goal is to get Julia to communicate more effectively, but so far she just points to the crayon box over and over =)

We're waiting on word tomorrow on whether or not we get a Julia-Gabriel play date in the playroom.  The only day that really works around my work schedule is Wednesdays - so it's tomorrow or next week.  Child Life is seeing when the room is available, but they're having to coordinate around Julia's MRI schedule on short notice. (Child Life / PT is only there during the week, and it's probably best to have professionals available for our first attempt at getting the tornado to sit down with his sister.)

Julia's MRI is a longer study, so likely at least 2 hours. We do NOT expect results back tomorrow.  Possibly as late as Friday.  Besides checking for the status of the cancer/stroke, they are also looking to "rule out infection risk once and for all".  Julia has been on antibiotics since her brain infection in December (for new followers - an infection is believed to have entered through the surgical site in the back of her throat [where the initial tumor was removed], and it caused her brain to swell leading to a stroke [this is also why she has that bulge on the side of her head - it's a shunt to relieve pressure]).  Due to the severity of the situation, she's been on antibiotics ever since just to manage the risk of residual bacteria causing a repeat.  So they're going to rule out the presence of that bacteria, and confirm all surgical sites are fully healed.  The hope is to wean her off yet another medication in preparation for going home =)

In non-Julia news, I had a really fantastic 'girls wellness night' tonight.  It was quite a bit of musical chairs to get everyone to everything, but in the end, chiropractor, massage/facial, and acupuncture, followed by dinner.  And the acupuncturist refused to let me pay after finding out I was Julia's mom - whom she follows.  So that was really thoughtful <3 (And she stuck a needle into the area of my abdominal pain... since that's what they do!  So we'll see if that offers any improvement in the days to come.)  Anyway, really great night. Much needed.  

(And since it will be mentioned - I've made progress on the Reed front - he's been very much enjoying his Friday nights/Saturday mornings with Gabriel, and we've even done dinner our the last two weeks!  So... progress!)

Picture tonight of Julia's speech session and a beautiful shot of her and Reed from exactly 1 year ago <3 And video in comments is two short clips - one from today and one from last June.  You can even hear it in Reed's voice back then how much he absolutely adores her <3 <3 


YouTube: https://youtu.be/1HX8nSg04kU

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


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


Julia's *only* 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!