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October 11, 2019

The day started decent, and then Julia became the grumpiest-grump-monster ever, then she had a big poop and got knocked out with anesthesia, and then she woke up nice and happy! She slept pretty well last night and had a short nap early this morning. Her feeds were stopped at midnight in preparation for today's chest port removal(!) procedure. She was supposed to be the first patient of the day, but things happened like they do, and she kept getting bumped. They finally called her down at 5pm, the LAST patient of the day! So this little girl became pretty hangry as the day went on =( PT stopped by but she was sleeping. Speech therapy worked with her for her morning session and it went well. She pretended to drink from her tea cup twice, and they noted she kept trying to give a drink to her stuffed animals <3 <3 She modeled the sign for "all done" when appropriate, and made it clear when she didn't want anymore. OT worked with her around lunch time. By now she was getting fussy so they stayed in bed rather than move her to her chair. They played with the pegs again, and they noted that she took them out of their hand when requested 10 out of 10 times, and got them into the peg board "with minimal assistance" 10 out of 10 times. So... positive marks! ... But then she started throwing them. So... session ended. That's about when mommy showed up and MAN was she grumpy! She was scratchy (herself and others), and she threw EVERYTHING. She would point to something like she wanted it, but she'd throw it and cry as soon as I gave it to her. She tested mommy's patience... which is limited to begin with. She finally went down around 5:00, and the procedure went flawlessly. They expected 45 minutes, but I think she was only in for like, 25. I started to clean the room since the bed wasn't in the way, and they came to get me shortly after I started. She was already all done and getting stitched up. They said it was super clean and the port came right now. She only needed gas for sedation, but they did end up giving her a few IVs... one in each foot. She was NOT happy when she woke up and realized she had needles in the tops of her feet! She rubbed her feet together trying to get at them, and of course that just made everything way worse. But she came out of anesthesia nearly immediately (as expected, given her history) and she was 'recovered' in like 10 minutes. So they took the IVs out and she instantly became happy-love-baby. She's still happy-love-baby several hours later =) We've called daddy several times on speaker phone and she's been VERY happy with that! Lots of smiles and claps and points at the phone. "dadadadadada!" But she seems to understand that he's not here right now, and she doesn't seem to super bothered. But she will be the happiest little girl when he comes back (almost as happy as him!). Gabriel is staying at Aunt Charlene's this weekend. I hate that I'm missing my weekend with him, but Julia needs me more =( And Reed can't even take care of himself with a cold... let alone a rammy toddler. Not like Gabriel needs to be needlessly exposed to that anyway. And so far Reed has followed his instructions to a T, and (finally!) slept most of the day. So, the day ended on a positive note: happy Julia and NO MORE PORT! ~~~~ Video in comment of her ride to and from surgery, and then her waking up <3

YouTube: . (Reed just texted to make sure I turn Peppa on for her at 9:30 <3 <3 <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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