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November 27, 2019

4-kid birthday bash was a success... and enough excitement for Reed for a month. . Medically, Julia has had a pretty decent day. Heart rate continues to be on the higher side, but... some fancy fluid (totally forget the name. A-something?) brings it down quite a bit. So she's been getting that every day or so. An x-ray today determined the pocket IS filling back up with fluid now that the drain is gone. Not alarmingly fast, but enough to detect on an x-ray in just 24 hours. Maybe that is alarmingly fast. Anyway, they are discussing what to do about it. She might need the drain put back in, but for now, they are just watching her vitals and comfort level. Additional tests on the fluid have all come back negative. Nothing grew over the 4 days they've had it: no bacteria, no fungus, etc. They have not said it's spinal fluid, but they also haven't said it's not spinal fluid. I don't think they have any idea what it is. But the most recent report is that it's down in the lab for more extensive testing, and it's certainly possible that whatever this fluid leak is, is why she's dehydrated and needing the supplement. They're also discussing options for blood draws so they don't need to poke her every day. They don't like the risks associated with the PICC line, since they aren't giving her anything regularly. But they mentioned another sort of line, I think a 'midline', that has pretty good success with blood draws, they just need to find someone who can place it. For the time being, they're going to try to get what they need out of just a toe prick when possible. But other than that, she's had a pretty good day. She's still clearly weak (like, she hasn't sat up unsupported in many days now), and her arm is slow controlling the iPad, but she's definitely more 'herself'. She blows the Julia Horn constantly to get Reed's attention, and then either holds her hand out to be held, or point at her nose to be wiped, or asks for help on the iPad. Today she sneezed and blew a big snot bubble, then full out hand-to-mouth laughed. After her party, she gave out SO MANY big Julia smiles. I kept grabbing the phone, but she would stop immediately. But seriously, while controlling her iPad, random things would just randomly make her laugh. It was so nice to see! So, we don't know what the fluid is, we're not sure yet what they're going to do about it, and of course everyone believes the cancer is still growing, but medically she's had a fine day =) ~~~~ The kids' birthday party was a HUGE success! Thank you so much for everyone who sent a card or gift <3 <3 All 4 kids' birthdays are within these three weeks: Gabriel turned 2 on the 15th, Cousin Kinley turned 13 on the 22nd, Julia turns 3 on the 2nd, and Cousin Joshua turns 9 on the 9th. Child Life printed awesome posters out for everyone, and helped decorate one of the family lounges. A friend made beautiful custom cupcakes. SO many people sent cards and presents. And lots of Julia's nurses, social workers, and doctors stopped by to see how amazing the decked-out room looked. The kids were all so patient waiting for the guest of honor to get wheeled in... which is a process. OK, partial lie. Kinley was patient. Joshua could hardly contain his excitement. I think I have a picture of him longingly staring out the door waiting for Julia to arrive so he could tear into his presents =) But Julia finally got all put together and wheeled in, and I got a great O-face in the hallway when she saw the room, and several smiles inside! Reed was able to be her sole caregiver while in the room, because he is fully trach-trained, so we didn't need a nurse or respiratory therapist with us at all <3 The kids were so happy... Joshua seriously couldn't have been more thrilled if he won the lottery. Kinley is just getting into makeup and got so much awesome stuff (and several gift cards that she wants to spend ASAP!). And Gabriel was just so excited to see all the Paw Patrol stuff he didn't know what to do with himself. "Paw Patrol! Paw Patrol! Paw Patrol! On the double!" Julia really had a nice time. She was watching everything with her one eye. Just happy to be involved. She helped open a gift, and then lasted about 20 more minutes until she fell asleep. She took a nice long nap while the other kids opened their presents, and then woke up again when Gabriel insisted she hug his dinosaur <3 Little guy also really enjoyed his time with Reed. They read a few books together, and he asked to get thrown up in the air a million times. Everything got opened, we had some desserts, they all displayed their loot for some pictures, and then Julia asked for her iPad, so we got her wheeled back into her room and got all comfy. She contently watched her cartoons in bed and gave us so many beautiful smiles. It was a lot of activity for her, but she had a great day =) I'm going to get a bunch of the pix and videos in the post tonight (I'm putting together the video - it will be up in maybe 15 minutes) . Thank you so much for making their birthday AMAZING!

********** ~~ 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 2018. You can find them all on my Facebook page or Julia's website <3

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