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August 17, 2019

A pretty OK day for Julia, but not much interaction as she's been sleeping since Reed's been back at the hospital!  She woke up enough to say, "dadadada" and then "iPadiPadiPad" and then she went back to sleep.  So she's been sleeping since around 4pm, but the nurse said she was up at 8:30am and has been on her HME all day. So we're looking at another ~16 hour HME day if she goes until midnight!   She's holding steady with the HME progress even though she's at her weakest.

Her vitals are decent, with an elevated heart rate as is expected for chemo recovery.  Blood counts are low.  And there hasn't been any blood in her urine or trach today, so we all feel really good about that.  

Now I'm just waiting for my FaceTime call after her bath <3 


A few people have asked how we keep Julia from falling out of the bed, especially during the limited time Reed's not in the room.  Right now, she doesn't have the strength or muscle tone to pull herself over the side rails.  She has been bedridden since her surgery on November 16th,. but IS getting stronger!  So unfortunately, once Julia is at risk of exiting herself from the bed, she will need to go back in a crib =(

And that day will be bittersweet for sure.  

Despite our best "new parent" intentions, Julia never slept in a crib.  She HAD a crib!  A nice one.  In a beautifully decorated nursery.  She just never used any of it.  (But Gabriel is now the unwilling occupant of a gorgeous pink princess crib.)

Julia started out in one of those in-bed co-sleeper things.  She slept in the bed with Reed, and I still slept in a recliner (due to my back injury).  She stayed in that thing until her head touched one end and her feet touched the other.  Then we tried to move her into her crib.  Didn't work.  So we took one rail off the crib and pushed it up against the bed, hoping to trick her into thinking she was sleeping with Reed.  Didn't work.  He'd wake up and find her butt up against his face... it was pitch dark and she couldn't even crawl yet, but she'd scooch and scooch until she connected with her daddy.

I don't remember why, but we eventually gave up (despite intentions and advice from countless parenting articles).  We just accepted that "some day" we'd likely regret our decision to let her sleep in the bed, like when it was actually time to move her into her big girl room.

But wow.  Can I tell you how HAPPY we are that we didn't force it with her.  Considering where she's ended up in life.  With the exception of a handful of "let's just try" nights, she has slept every night of her life right where she wanted - next to Reed. 

Anyway.  When we got to the hospital, they gave her a crib.  She refused to sleep in it.  She'd lay there since she had no choice, but she wouldn't sleep.  She'd finally sleep once she was out and with Reed.  So once she had her surgery, she didn't have a choice =(  I have nothing against cribs, but we just hated seeing her separated from Reed when she was so sick =(  In January when they put her on hospice, they offered to switch her to a bed so we could snuggle her... since she was in no danger of moving. 

So she's been in a hospital bed since then, because she's still weak and unable to toss herself over the side.  But given her age, she *should* be in a crib.

And (hopefully) that day will come!  It hurts my mom-heart knowing she'll be back in a crib - I know she will feel isolated and confused, and we really can't crawl into the crib and lay with her.   BUT.  It will also mean that after 9 months of laying down, she's finally strong enough TO fall out of bed! What amazing progress that will be from "a days to live" coma.  So we're not quite there yet, but it will be bittersweet.


Pictures: It took spine fusion and a halo brace to keep this girl from sleeping with Reed... For the first two weeks (before surgery) she refused to sleep in her crib.  So Reed held her in the chair or on the couch, and eventually they just started sleeping on the floor <3 Anything to be together.

Video in comments: From the other night with Julia half-sleeping waiting for her bath... she's giving us a preemptive no-finger, but as soon as Reed (quietly) says "alright..." she knows it's time and is NOT happy!  And then the other day I talked about the adorable hide and seek we started to play at home - she'd always hide in the same spot behind the couch (and would say "no" when I asked if she was hiding certain places).  I didn't realize I had a video of it, but I do!  From exactly a year ago <3 



. ********** ~~ Julia Adams ~~  ***********    ************* Official Links ************* *************************************

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

Julia's official fundraisers:  T-shirts: | Children's Book: Jewelry:

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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