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September 25, 2019

Julia's more comfortable today, but she had a fever this morning. Not what we want to see. But so far it has controlled with Tylenol. Since Tylenol, it's been between 98-99.5 which is OK. They sent off respiratory, urine, and central line cultures. Urine and central line came back negative, we're still waiting on respiratory. She's been started on 3 broad spectrum antibiotics just in case - they will run for about a week. She's vomited a few times, but since then, with the Tylenol and antibiotics, she's clearly more comfortable and her heart rate got as low as 150s during the day. Now in the evening it's back up to 160s. She's seriously slept all day. I think she's been awake for maybe 10 minutes 3x today. She's been sleeping since I've been here, and the nurse said she was sleeping for hours before that. We're about to wake her up for her bath and strings. I guess tonight I'm going to try holding the trach. I've never done that part before. I always clean her neck / tie the strings while Reed holds the trach. My biggest concern is by far my back. I just can't stay leaned over for any period of time (and I mean like, 15 seconds is my max). And even when I'm doing the other part of the routine, I have to constantly stand up when I feel my back start to spasm. Obviously if I am holding the trach in her throat... I can't do that. So, I guess we'll see how it goes. I expect poorly. I want to get this post up in case this process is long. All I have is another video of her sleeping the day away (in comments). If she happens to wake up all happy and smiley, I'll add another video. ~~~~ September is Childhood Cancer Awareness Month! Another great foundation to look into is Ellie's Hats =) Ellie's Hats was one of the first packages Julia received, shortly after she started losing her hair. It was full of hats: all colors, materials, shapes and sizes. ...Now, as soon as Ms-Grumps-A-Lot lets us put something on her head, we'll get some pix! Her blue "Ellie's Hats" t-shirt is a regular in her hospital gown rotation =) About the Foundation: "Ellie’s Hats mission is to brighten the day of a child who is battling cancer. We do this by sending a package of hats and other items for the child battling cancer and their siblings. We include hats for the siblings too because often they feel left out. We have sent over 1,500 special packages to children across the country. For families in Northern Virginia, which is where we are located, we are able to do more than send them hats. We work with The Pediatric Specialists of Virginia Clinic where each month they select five families that will receive a $1,000 check from us. We have helped children enjoy special events, and have been able to grant some of them a mini make a wish.


In the spring of 2013 a little girl named Ellie was diagnosed with acute lymphoblastic leukemia. By the time she started kindergarten in the fall, she had lost most of her hair and was wearing hats to school every day. Her PE teacher Jay Coakley noticed how much Ellie’s liked to wear fun hats to cover her bald head and decided to get her some hats for Christmas. His friends and family heard what Jay was doing for this little girl and they wanted to help. Before Christmas Jay had collected 140 hats. He decided to donate 130 of the hats to a Holiday Party that Ellie and other cancer patients were going to. Hearing how much the children liked picking out a hat Jay decided to start Ellie’s Hats." Ellie's Hats is another fantastic foundation for your regular donation, and at minimum a Facebook "Like" =) Website:

Facebook: ~~~~ Video of sleeping beauty in comments <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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