top of page

October 17, 2019

Rough night and morning, but good afternoon. This little girl just refuses to sleep at night. So when morning comes, she's about as grumpy as can be. Medically, she's doing just fine. No fever. All tests and cultures have come back negative, or "normal respiratory flora". It's possible she still has a virus that isn't picked up by tests, but at this point they aren't concerned. They've stopped the gown/mask/glove precautions. She's also been back on her HME all day AND took a 4+ hour nap on it - and did fantastic! Oxygen saturation 99%. She continues to have no rate on the vent at night, and does wonderfully. So she's doing REALLY WELL (breathing wise) for being sick with a cold =) So all the vent does at night is gives her a bit of extra pressure every time it detects her taking a breath - so it slightly inflates her lungs to just make breathing easier (allowing her to get more restful sleep). The next goal is being on the HME all day and all night. Which would mean that even after a long day of PT, in her deepest sleep, she's still doing 100% of the work. Once she's in this state for "a while" they can consider removing the trach. And we're making progress! She's thrown up several times today. One big one in the evening after her nap. It's clear when she gets really nauseous and uncomfortable, and she has become an expert at sticking her finger down her throat. So she does that, gets the job done, and feels better. I mean... part of me is happy she's figured out a trick to get past the nausea, but another part of me is like... the thought of a two year old knowing how to make herself vomit because she's so tired of always feeling sick is so depressing. But our (amazing) nutritionist sent in the first round of immune-boosting supplements and patches to start Julia on. So those are on the way, and the list has been sent to pharmacy and oncology to confirm there are no concerns. Hopefully we can start giving her body everything it needs, and really assist her recovery =) . OT stopped by this morning but she was sleeping (much needed), so they didn't wake her. But she did have a FANTASTIC PT session. They got her on the floor again, but she refused to cooperate while sitting on the therapist's lap. So Reed switched positions and he held her on his lap while sitting cross-legged on the floor. They used big colored shapes and really gave Julia a workout =) They put them on the floor between her feet, and she had to lean over, grab them, and sit herself back up to get them in the bucket. They'd put them down at an angle so she had to twist. They put them out to the side. They held them up above her so she'd have to look around and reach up. She grumped while doing it, but she did it! She even used her LEFT ARM to push herself back up to sitting. Reed said "It wasn't beautiful or anything, but it happened". And daddy is really pushing his little girl to get better <3 She would start to get tired and the therapists would ask if she was ready to go to bed, and Reed would be like, "I think she can reach for another one". They played her OUT. It was really a super great session. And then she went right down for a FOUR HOUR nap (and woke up much happier!) Unfortunately I don't have a video of that session because Reed was holding her. He took a few videos at the start but she was NOT happy. She was really just lurching and trying to throw herself off the therapists lap... so... no need to include those =) . Picture tonight of two amazingly beautiful portraits that got delivered today!! I can't wait to frame these and get them on my wall <3 <3 <3 I don't have a current video, so I found one from a year ago (last October 8th). By this time, I knew how sick my dad was, and I was aware of how few videos I had. So I was constantly finding ways to 'sneak' videos of him. Here I was pretending to film Julia, but I was really just wanting to get more to remember my dad by. Here he is fixing my spice rack (with a few adorable Julia faces thrown in!). Not to bum out this post, but this video was exactly one month before he passed to melanoma, and one month and a day before Julia was diagnosed with cancer. Seriously. This is how fast cancer can go from bad to worse. If you haven't donated to research in a while... now's a great time to give a few dollars <3 And then a silly video of Gabriel from dinner tonight because I don't mean for this video to be sad - just showing my dad being awesome, and Julia being adorable <3 In comments.

********** ~~ 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

243 views0 comments

Recent Posts

See All


bottom of page