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June 17, 2019

My mammogram/ultrasound was completely normal (I'll start there since so many people messaged - thank you!)  And apparently someone from the office follows Julia and recognized my name =) So, hi!  I guess that HIDA scan at some point is the next step to figuring out this phantom pain.  If they don't think it's cancer, it's just such a low priority. 

Julia finally went to bed at 6am and is JUST waking up at 9pm.  She's been really exhausted, and has been struggling with a pretty high heart rate (185+) and quite a bit of barfing.  Finally around 3pm a combination of Tylenol + Ativan + CPAP settings got everything under control, and she slept peacefully until they just came in for her bath.  No HME breathing sprint today because she was already struggling a bit to keep her saturation up.  No concerns - they're sure it's just because she was so tired.

We had planned to do our 2nd trach change tonight, but it got moved to Wednesday because that's when they scheduled her MRI!  Oh man... so many feelings about that.  I want to know, but I only want to know if it's good.  This will be our first look in several cycles... really really hoping to see the tumor has continued to shrink and that her stroke damage area has seen more healing. I'm finally starting to accept that she's beating this... and that she'll be coming home to live.  I've mostly blocked January and February out of my mind, so bad news would be devastating all over again.

(They need to swap her trach out for an MRI-safe one for the procedure, so that will be 2 changes in the same day and they try to limit it to 2 max a week for irritation / infection purposes.)

No therapies today because she was out cold.  We asked the nurse about Julia / Gabriel play time and they're looking into options =)  Julia did warm right up to a new Peppa-outfit-change toy from a new Facebook friend <3 It's proving difficult to get her interested in toys, but she got a big kick out of putting sunglasses and hats on Peppa =) (... and then she chucked it.  But I still count that as a success!)

And Reed snuggling her for a nap in the evening has become routine - after she's nice and happy with her clean bath and strings.  And last night while cuddling her, she heard Bubble Guppies came on and managed to twist her little body around to point at the TV with a big smile.  Reed asked if she wanted to lay down and watch Bubble Guppies and she did her happy yes bounce! Then he put her in bed and she kept pointing at the TV and him, letting him know how excited she was.  How NORMAL is that!?  It made me so happy to hear she finally turned down the comfort of Reed for her favorite cartoons!! 

Pic and video (in comments) are of her happily channel surfing on her iPad after her bath tonight <3


YouTube: https://youtu.be/UZ5imok9p6E

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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!