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April 3, 2019

Chemo day 3 of 5. TIRED TIRED BABY! ‍‍‍‍‍‍ ‍‍

She had her procedure today, to push the feeding tube a bit further down into her system to hopefully bypass any barfing. They did that around 8:30am. It was a quick 20 minute procedure done with a longer tube and a scope. No issues. They've been slowly increasing her feeds throughout the day, and so far no vomiting. They're going to give it a day or two before declaring it successful, just because her stomach is still mostly empty. I really hope this helps. So many other parents say this helped. I can't wait for Julia to stop throwing up! ‍‍‍‍‍‍ ‍‍

They got her back in her stroller again for the 2nd time! She's still attached to non-mobile equipment, so she couldn't go anywhere. She threw her animals out of it, and tried to kick Reed (playfully) a few times, and then promptly fell asleep. So she took a 40 minute nap in her stroller before getting back in bed. But Reed commented that she really did well holding her head up and even turned it from side to side quite a bit. (This is really great news given her spine fusion -- we're still not sure how much strength/mobility she has.) ‍‍‍‍‍‍ ‍‍

OT also stopped by and showed her a cool over-sized egg carton toy thing. She thought that was pretty neat. She'd take them out one at a time and drop them on the bed, then pick them up and put them back in. As soon as they were all back in, she'd say "more!" (silently of course). She just needed a little assistance with her elbow, but once it was propped up, she was able to do it all by herself =) She's just not quite strong enough to hold her whole arm up at once. The OTs commented that she's made great improvements just from their session 1.5 weeks ago. At that time she was grabbing things with a whole fist, and struggling, whereas today she was only using the required fingers, like her thumb and pointer. So much finer finger control with hand movements - more on par with toddler stage, rather than infant. ‍‍‍‍‍‍ ‍‍

And the video today is of her kicking her leg real good! She's exhausted on chemo, and has essentially no muscle tone anymore, but she's trying! She is READY to be out of this bed! (And check out her LEFT arm moving!!) ‍‍‍‍‍‍ ‍‍

I know that looking at this video you see a very sick kid with cancer... which is accurate... but if you're new to her story (hi!), definitely check out where she was in January (January 6th is a good [depressing] start). She's doing SO MUCH BETTER! She's headed in the right direction for sure =)


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

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Julia's *only* official 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 ♥

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