top of page

September 15, 2019

A good day. Lots of sleeping. She slept well last night but was just super tired today anyway. When awake, she was nice and happy and requested plenty of cuddles. She looooooves when Reed naps with her. Now she has enough mobility to snuggle in and get comfy. So they've taken several cuddle naps this weekend <3 Baffling update on the mucus/allergy front. They said they were going to discuss additional tests / medications in case the excessive snot is allergy-related. Today they said they "want to observe her first" to see if it's viral. Like... what the hell have they been doing? We've all been observing her, and her snot waterfall, since spring. I think it's fair to say we're past that step... I wasn't down there, so I guess i'll figure out tomorrow exactly how long this "observation" step is expected to last... you know, in addition to the previous 5 months. Oh, and she learned how to undo her trach strings today! That's not super awesome. I guess she was scratching and fiddling around, and Reed and the nurse heard the velcro come off (I'm sure it's kind of like hearing a snake when you don't expect it - it's not a sound you ignore!) So they jumped over and grabbed her trach before anything bad happened. I guess we'll see where this new-found skill takes us. Speaking of strings, Thursday when we changed her trach strings, I had the role of holding her arms down / keeping shoulders away from neck. It's the first time I got to feel how STRONG she is while fighting! It was impressive. It was not an easy job... and now I understand why 4 people are needed if she's really angry. Even her LEFT arm is strong. It feels almost as strong as the right, though there is clearly a lack of control, even while flailing. And she's really limber. She can get her knee right up to her chest in an effort to kick you in the face. Super proud =) ~~~~ Gabriel took a trip to Highland Orchards <3 He ate some apples and fed some goats. He was too scared to actually pick the apples (?) but he seemed to have a good time running up and down the rows. Oh, and apple cider donuts... mmmmm. They will always remind me of dad <3 He would go out of his way to and from clients, just to "pass by" and pick some up for our office. So I had one in honor of him. OK four. Gabriel's now back with Charlene, so my 3 days with Gabriel have ended, and my 4 days with Julia begin. Looks like Gabriel is on track to turn 1 and 2 while his sister is in the hospital... but we're getting closer to all being back home <3 Video in comments: Julia tonight - also shows the constant stream of saliva and mucus (that they're 'observing'). And bonus clip of Julia from a year ago today <3



. ********** ~~ 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

200 views0 comments

Recent Posts

See All


bottom of page