top of page

April 30, 2019

Julia had a HUGE day!!

First thing this morning they got her in her stroller and took her for a little walk! They only made it as far as the nurses station, and then got held up while all the nurses ooh'd and aah'd <3 Julia was a bit hesitant and INSISTED Reed stay within arms reach. If he walked away (like literally 5 feet to get a coffee), she'd start pointing and mouthing "dada, dada, dada". So they had to prop open the door while he got coffee to remove the barrier between them <3 But she did REALLY WELL!

Reed texted me those pictures, and I asked him where the video was - he said as soon as he started taking pictures he realized he forgot to plug in his phone and it was almost dead! I was bummed I wouldn't get to see her out and about =( But when I got down there around 3:00 for our trach training... I walked in and she wasn't in her bed! She was on the floor for PT / playtime! I was SO HAPPY that I got to see her do a therapy session =) They are usually first thing in the morning, and I don't get there until the afternoon. She did SO GOOD!

One therapist alternated between supporting her a lot, and only supporting her a little. With no support, you can see she definitely hunches down to the left (this could be either left-side weakness from the stroke, or weakness from the spine fusion (likely both), and it should get better in time with practice). They COULD get her into a more upright position, but it caused discomfort and she didn't prefer it. They don't think she's in pain-pain, because she calms right down as soon as she stops (as does her heart rate), so they say it appears to be discomfort, weakness, and possibly fear of pain. But they think she's past the surgical-pain recovery stage.

They focused on trunk strength, and getting her to reach, twist, and bend. They encouraged her to support her head when leaning forward (something she definitely hasn't had to do with all the bed rest!) That was the most difficult for her, but she was motivated with the fun game =) She would try really hard for a few minutes, and then need a break. She'd lay back in the therapist's arms and take a breather. OMG Reed would just stroke her cheek if she was worked up and she'd relax immediately and practically melt into him. He almost put her to sleep <3 <3 And then she would get back up and go again! They tried to get her to do several small games (like knock a stack of cups over), but she was ONLY interested in passing shapes back and forth with Reed. And her little smile of pure JOY when she handed a shape to Big Peppa!!! <3 <3 <3

So she worked REALLY hard, and it took a LOT out of her, but just did such a good job with her first playtime session on the floor. And of course she got some really great hugs. In the picture below, Reed hugged her and asked, "Can you hug daddy?" And she slowly walked that little right hand all the way up his arm until it was on his shoulder for a hug <3 <3 <3

And then she got back into bed, requested the covers, and promptly fell asleep. She was OUT!

I didn't know which video to share, so I put three short clips together - in the comments =)


. . . ********************************* ********** 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

330 views0 comments

Recent Posts

See All


bottom of page