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March 31, 2019

Last day of March, so it's been exactly 5 months since Julia's been in the hospital. Coming up on 1/5 of her life. ‍‍‍‍‍‍ ‍‍

She's been really struggling with vomiting. Several times today, and a lot every time. They're starting to get concerned that she's not getting adequate calories (not to mention all her required meds). They aren't basing that concern on anything like weight or urine output, yet, but just the amount she throws up throughout the day. Several things could be the cause: chemo, poor administration of meds, over-sensitive gag reflex (with increased awareness), withdrawal, new formula, and/or a known possible complication after prolonged intake of RSO. Lots of really valid options... no idea which it is. So right now they're still just trying to tweak how they administer everything. ‍‍‍‍‍‍ ‍‍

A change today was to switch from continuous feeds, to feeds for a chunk of hours, with a break in between. That means she gets a higher quantity at once, which could be irritating, but she gets a nice long break around things like string changes (which make her gag). An actual solution would be a different sort of feeding tube - one that goes directly into her intestines rather than her stomach. But I don't believe they would consider that until they're completely out of options, as that's another surgery (risk of infection) while on chemo. ‍‍‍‍‍‍ ‍‍

Other than that, she seems to be doing well, and her vitals are really great. She didn't go to bed until 11am today, so she was asleep ALL DAY! She's making it very difficult for Child Life and PT to hang out with her with that schedule! But Child Life did stop in today to try to entertain her during a trach change (which she hates). They brought her a Peppa Pig dollhouse to play with =) But she was so tired (in the middle of the day) that she really just slept through it. Reed tried to play with the dollhouse with her this evening, but all she wanted to do was throw the pieces. I guess that's better than nothing =) ‍‍‍‍‍‍ ‍‍

Physically, she did a few solid leg KICKS today, not just twitches - so, getting stronger! And she's now able to lift her LEFT arm up at the elbow! That's the arm they weren't sure if she'd even be able to move after the stroke (in December). It's a bit behind the right as far as progress, but it's certainly improving along with everything else. And she's reached up to her face many times with her right today to rub her eye =) ‍‍‍‍‍‍ ‍‍

The 4th round of chemo is expected to start this week, but we're not sure when. I believe they will check her labs again tomorrow and make a final call. Another MRI will happen when she recovers, so, ~3-4 weeks. Everyone is SO ANXIOUS to see if there is a measurable reduction in tumor size, considering her physical/neurological improvements these past few weeks. ‍‍‍‍‍‍ ‍‍

Edit! Have to add this AMAZING LIVE PERFORMANCE of "Julia's Song" by Charlie. This was shared with me today, and it's amazing. Charlie is 12, and wrote the most beautiful song for Julia. I shared a recorded version last week, and today he sang it live! Starts around 3.5 min in <3 <3 <3 (Not sure if there will be sharing/permission issues - hopefully that link works for everyone!)

[I only have a Facebook link - sorry to website-only friends =( ]

YouTube video of Julia: ‍‍‍‍‍‍ ‍‍ ‍‍‍‍‍‍ ‍‍

. . . ********************************************* ************** Official Links *************** (These are here because of scammers) *********************************************

Julia's *only* website: Julia's *only" Facebook page: Julia's *only* GoFundMe: Julia's *only* official fundraisers: T-shirts - | Jewelry: Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

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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