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October 18, 2019

Reed's home with Gabriel so we're having having some 3/4 family time. Gabriel was very happy to wake up from his nap to his daddy <3 And it's nice knowing Julia has 24/7 one-on-one time, so she's never alone. Julia had an OK night. She was all smiles, claps, and waves when she woke up at 7am, but then turned into a grump after her morning bath. Some Tylenol helped calm her down - likely still fighting this cold. No fevers though. OT had a short session at max-fuss time. She wasn't very cooperative to start, and it only lasted about 15 minutes. PT tried to come by at the same time, so they couldn't work with her. Ugh. Then Julia fell asleep for another long 4 hour nap, during which time speech attempted to stop by, so of course they couldn't work with her either. I will have to ask if her very long nap times are being documented on her therapy notes... clearly if she's sleeping 6+ hours during the day, it means she's not super well rested at night. So of course she's going to be grouchy during her morning PT. I'm really hoping her crappy sleep schedule, combined with her cold, is not affecting her candidacy for acute rehab right now. Everyone has acknowledged how important these therapy sessions are, but they have to juggle that with allowing her plenty of time to rest. She's continued to vomit regularly throughout the night and day, but feels better immediately after. Heart rate in the 140's all day, which is fine. I just called and checked in again, and the nurse said Julia is happily watching Peppa and channel surfing on her iPad - all claps and smiles =) ~~~~ The current plan is for Reed to go back down around lunch tomorrow, and Gabriel, Aunt Charlene and I will be going to the Red Corner Benefit. This organization was involved with choosing Julia for the "No Shave November" event the local police station did last year in her honor. So we're so happy (is that the right word?) to support this year's family at the event. If I can get FaceTime working on our iPad, I might walk Julia around with us =) "Red Corner Benefit is a non-profit charity dedicated to raising funds and awareness for local children battling cancer. Our annual Benefit, hosted on the 3rd Saturday of every October, consists of live music, food, drinks, face painting, pumpkin painting, a mobile zip line, a petting zoo, bonfires, sky lanterns, and a generously donated professional fireworks show all comprised to raise funds for a local child fighting cancer. Each year a new child is chosen with the help of all previous recipient families, friends, and organizers of RCB. Our goal is to raise awareness of the number of children fighting cancer, to give them the financial and emotional support needed during such difficult times, and to create a very special day in each child’s life to help combat the daily struggles they endure during their battle. The Red Corner Benefit is a group effort of family, friends, neighbors, and local businesses – an entire community coming together to fight childhood cancer one child at a time." If you're local, here is tomorrow's event info:Website: Facebook Event: ~~~~

Pictures today: I took Gabriel to Spirit Halloween to find a few things for Julia's fancy picture I want to do on Sunday. It was a rough visit =( This was the exact store we were at the day before Halloween last year when we decided to take Julia to the ER. We walked right out of the store and drove to Urgent Care, then to Chester County Hospital, then to CHOP. Her Red Riding Hood outfit is still in the bag somewhere. And of course I donated to Spirit Children - a fantastic charity that benefits your local Child Life department. Child Life plays with the kids, decorates their rooms for birthdays, brings Christmas presents, sets up play dates with family, talks to siblings of sick kids in age-appropriate terms... and they are also the ones who are trying to do nice things next to the bed of a dying child. They're the ones who helped us get our final hand prints, they did Julia's hand molds, and some artwork. Child Life supports families and sick kids at their best, and at their very worst. Funding their department allows them to do their job better. And if you're shopping at Spirit Halloween, that likely means there's some amount of disposable income, so be sure to give a few dollars and make a sign for Julia <3 And no new video because she slept all day until Reed left. So I found the one from the very last time we heard her actually talk. It's a short clip. This was the 2-day gap between having her breathing tube removed and having it put back in in preparation for the trach. (She was unable to support her oxygen levels because she was just so tired.) Her voice is raspy from having the breathing tube in her throat, and all her surgeries... but these are 2 clear "no's" from the Julia. ... hopefully we hear this sweet voice again soon <3

. . .

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

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

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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