top of page

November 25, 2019

Another 'best' day since being in the PICU. More alert than yesterday, much more vocal, a little more mobile. Her vitals are decent. Her heart rate climbed up quite high after the drain procedure the other day, and some IV fluids brought it down by 25 points (the fluid collecting near her lung likely belonged somewhere else in her body). But her heart rate has inched up again today, so they are prepping some more fluids. Other than that, she's doing pretty well, considering. The drain has continued at about 10ml an hour so they're not quite ready to remove it. They are holding off on the x-ray until tomorrow, just because it's still doing something. The drain also became slightly dislodged (likely Julia's doing), so it's leaking a bit onto the bed... they are looking into options there. No additional tests have come back, but we do expect results "soon". Her IV had to be replaced today because I guess it puffed up a bit - they don't last forever. Reed had to stop them AGAIN from digging into her veins without numbing cream. I guess I'm bringing down a sign to put on the door, because clearly there is a lack of communication between the nurses and the phlebotomists. But the numbing cream did get applied, and now the IV is back in her left foot. She's not happy. But... at least she can tell us she's not happy again. Way better than overly-lethargic baby. . But she has been very vocal today. Lots of "Julia horn". She's able to get our attention again if she needs something <3 like if she kicks her iPad out of the way (because she can do that again!) or if she needs her nose wiped. She can also touch her nose again! She lost that ability over this past week due to weakness or pain, possibly both, with that fluid pocket. So it's really nice to see her touching her own face again. And she's definitely started to regain strength. Not nearly what it was, but even during "mouth care" (where they swab her mouth with some nasty solution), she grabbed the swab right out of the nurses hand and chucked it! Well... she tried to chuck it. But her hand didn't fully cooperate so she really just dropped it a few inches from her face, but she INTENDED to chuck it. Opinionated baby =) ~~~~ I wanted to do a quick reminder about the kids' "birthday bash" on Wednesday. I really really appreciate how many people around the world love Julia, and her little brother, and her sweet cousins. But I wanted to remind everyone that Julia is very sick. She's in the intensive care unit, she's actively doing chemo, she has at least four "accesses" directly into her body, and it's flu season. There have been a lot of well-meaning people wanting to send costumed characters or stop by to drop off presents. I understand that even the news has been trying to get in touch with the hospital today because they want to participate in this party. We have to politely decline all of that. Costumed-anything would freak Julia out, and we just can't expose her to other people. Even if it were safe, our room is about the size of a large closet, which is already too small for the 10 people who will be in it. So while we REALLY appreciate the massive amount of love these kids have received (seriously, their birthday will be AMAZING thanks to you guys!)... please don't show up at CHOP. I will take tons of pictures and videos, and if things are going well, I might even try to live stream for a bit. But please no unexpected visitors <3 Continue loving from afar. If Julia beats the odds again, I will invite you all to her coming home party. Just not in the ICU. ~~~~ Picture: Julia sleeping soundly last night <3 And Charlene playing dress-up with Gabriel... this is why it takes her 4 hours to shop anywhere. Video in comments: Julia received a VERY special gift from her favorite animated pig <3 Thank you so much to the awesome people who made this happen, and of course to Peppa <3 <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 2018. You can find them all on my Facebook page or Julia's website <3

442 views0 comments

Recent Posts

See All


bottom of page