top of page

May 7, 2019

Julia had a really good day! Vitals are great, barfing is limited. Her levels are starting to rise, so she should be feeling better over the next week.

She had a visit from OT and it did NOT go well, as you can see in the picture! I think they woke her up too early from her nap and she was a grump-ball. They still don't think she's in pain-pain, as her heart rate doesn't reflect that. They think she's uncomfortable and angry. (But she also snuggled next to daddy for a nice peaceful nap afterwards, so that made up for it!)

I finally did my first trach care with Julia. It was pretty awful, not going to lie. The nurse held the trach, and I undid the velcro, cleaned her neck, cleaned the trach hole, and put everything back together. I got about 90% of the way through and then I needed to stop. Reed finished. He's not having difficulty at all. They are really encouraging training every day, so she's able to leave as soon as she's medically ready. Possibly as early as a few weeks!

The best part of Julia's day was the awesome visits with her cousins! Aunt Charlene, uncle Jonathan, and cousins Kinley and Joshua, (and of course baby brother) came to visit. Kinley and Joshua saw Julia almost every day before she got sick, and they've been patiently waiting since JANUARY to visit! They were not allowed in during flu season (hospital policy), but exceptions are made when a patient is on hospice. So the last time they saw her in person, they were both lying in bed with her, crying. They knew what was going on so they thought they were saying goodbye forever =(

So tonight was EXTRA SPECIAL given what was going on last time! As you can see in the video, she was just SO HAPPY!! First she gets to see Aunt Charlene, then Kinley, then Joshua, and then she hears baby Gabriel and her face lights up! The video I took was longer, but I had to cut it short to transfer it off my phone (hospital internet). But you can at least see how happy she was =)

They visited for a few hours, and she got cuddles with everyone! Well, except uncle Jonathan... he's never been her favorite. She tolerates him. But she got bed cuddles with Charlene and both cousins; they clipped her nails, read her books, gave good hugs, got her to laugh... She is going to sleep good tonight =)

It was so nice to see her so happy <3 <3 Hours of smiles.


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

Julia's *only* pages: Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers: T-shirts: Children's Book: 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

308 views0 comments

Recent Posts

See All


bottom of page