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September 11, 2019

Short medical update. Reed came home today and we both got to spend time with Gabriel for the first time in weeks! He's over his cold other than a lingering cough. It was a really nice time - lots of crayon stealing and chasing the cat (... maybe not a really nice time for the cat.) Reed's on his way back down now, and I just got a short update from the nurse. Julia had a fine day - no concerns. No medical changes during rounds. She hasn't thrown up all day (again); in fact, her barf during her trach change last night was the first episode in a few days. So things are looking better there. The nurse was able to see that Julia participated in "all her therapies" but notes were not in yet so I don't have details on which therapies and what they did. But it looks like she was interactive. They noted that they expect her participation to increase as she feels better off of chemo. We have a tour scheduled at Good Shepherd in Allentown next week - that's the other acute rehab option. Since they are able to offer private rooms for someone in Julia's condition, that's something we'll look into now. It's pretty far away, but it would be temporary... and honestly, it's probably comparable to sitting on 76 into Philly. But when I called, the nurse was attempting to sneak some vitals because Julia had fallen asleep sitting up next to Big Peppa and she looked awfully peaceful <3 ~~~~ Thank you everyone for the hospice information last night! Turns out, pediatric hospice is not the same as adult hospice, and children have the right to pursue life-saving / life-extending measures while on hospice. So the mother went into her phone call well prepared, but they didn't even push back. Her child is getting an NG feeding tube first thing tomorrow so they can give these alternatives a shot =) Her little one is doing pretty OK - up and about, just very tired and not super interested in keeping hydrated (possibly partially due to starting the alternative meds). So thank you everyone for the information! <3 ~~~~ Julia video from last night in comments. Some adorable little mannerisms while she's looking in the mirror =)

YouTube: PS Happy birthday BFF Alicia. YSAFH. .


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

Julia's official pages: Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's official fundraisers: T-shirts: | Children's Book: Jewelry:

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

Chordoma Foundation:

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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