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October 23, 2019

A pretty good day for Julia =) A few medical updates. They've started doing a 'permanent' vent on her g-tube to see if it helps the nausea. This just helps relieve possible pressure and can pull out excess mucus. It started a few days ago (and her nausea has been less... so who knows). She's only had one small barf in the last 3 days. She also should have done her new one hour cuff-down trial again, and there were no notes, so I assume that went well. Someone also mentioned in the comments yesterday that the scope patch behind her ear (for her nausea) might have made her eye go weird if she touched the medication on it and then touched her eye... and she picks at it constantly and touches that eye constantly, so it's certainly a possibility. An OK day for therapies... she was probably exhausted from yesterday. She had OT and speech this morning. OT went well, but I guess the speech therapist was new to Julia so it wasn't super awesome. It takes a few sessions for Julia to warm up, so it was short and grumpy. The team got together and came up with a more official sleep schedule. IDEALLY she'll start winding down at 8pm, asleep by 9:30pm, and then up around 8am. They'd like her to have her morning bath and be pretty awake for her morning therapies, then she'll have room for a 2 hour nap, and then hopefully be re-energized for afternoon PT. This is all a big switch for our little night owl, but it's what needs to happen for her to get all her therapies. And then on the weekends we'd like to get Gabriel and the cousins in to visit so she has engaged interaction Saturday and Sunday when therapy isn't happening, just to make sure the schedule stays on track. I'll need to adjust my own schedule as I often don't even get to the hospital until 7pm. I also did another trach change last night. I still pulled it out... I need to put it in several times, but I'm not there yet. The trach change went MUCH better than previous ones. She still fought, but I didn't completely panic. Knowing that she's pulled her trach out several times lately and was totally fine helped a ton! One time it was out for a good 40 seconds and she was OK (mad, but safe). So I definitely feel less like it's a loaded gun. It was also my first time seeing her new Julia-proof trach ties. I like them better than the velcro. ~~~~ It is our anniversary on Friday. I feel like we should do something... but with my 'free time' I only want to see Julia, and he only wants to see Gabriel. It feels wrong to go out and do something together when one kid is in the hospital and the other hardly gets to see us. In just 5 day we'll be at the year mark since all this started... We haven't lived together or had anything resembling a normal family dynamic in so long that the relationship just feels weird. I'm constantly in survival mode, and he's accepted and become comfortable with his new routine. I'm still trying to think of something short to do, but honestly I'm already too tired and it's only Wednesday. . Pic tonight: A mega-zoom on the horizon of her scalp - visible evidence of her hair coming back! She still looks bald, but look at all these little fuzzies =)

Video in comments: One clip from the very end of her PT yesterday. She struggles more with this one, and it does a good job showing the current limitations with her left arm. Added a bonus clip of Reed's short but sweet visit with Gabriel at home tonight <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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