Search

June 22, 2019

Julia had a much better day today =) Vitals are great, heart rate is back down to normal (for her) which is ~120s.  She's still a snot factory, which frustrates her.  She's definitely attempting to make noises around the trach.  No real audible words other than "No!" but different sounds coming out now.  No HME breathing sprints today since she wasn't cooperating.  That's how she weans off the trach, so hopefully those can pick back up tomorrow.

She was VERY excited to have daddy back =) She insisted he lay next to her (by pointing at him and smacking the bed until he did), and then she didn't keep her hands off of him.  She wanted to watch her iPad, but unless she was changing a channel, she had one hand on Reed.  He really wanted to take a nap next to her, bus she kept hitting him with Tiger and grabbing his beard, so that didn't happen.

And her left arm continues to improve.  I haven't seen her grab anything with it on purpose yet, but she was definitely targeting her hits when she wasn't happy with the nurse.  And several times today she had it resting up on her chest with her right one.  She's definitely moving it around with purpose, I think fine motor control is next on the list.  

We are waiting to hear what her team thinks the correct next course of action is (continue chemo / different chemo / take a break from chemo). My guess is continue for at least 3 more cycles. We should know more this week.

~~~~~

And I have to share this amazingly wonderful gift!  A Facebook friend painted my kitty Socks and had it beautifully mounted and framed <3 (For new followers - my 15 year old cat Socks died [of cancer... unexpectedly], just days after we were told Julia was dying of cancer.  I had just gone home to grab clothes so we could stay by her bedside, and Socks was clearly very ill.  We put her down at 3 in the morning.)

Growing up in a dog family, this is the cat I wanted since I was a little girl - a black and white tuxedo named Socks.  When I moved in with my dad shortly after my parents' divorce, I think he felt bad and brought me home my first cat!  He tried his best, but it wasn't THE perfect cat. She was a grey tabby and I named her Daxy.  We did the responsible thing and got her fixed.  ... 3 months later, out popped a litter of tuxedo kittens!  I gave two to good homes and kept two for myself - Peepers and Socks <3 

I had 15 wonderful years with my Socks kitty, and I've hardly given 2 seconds of thought to her passing with everything going on.  I had been absent a lot during her last few weeks, with both Reed and I practically living at the hospital. But she held out for me to get home.  And while I was frantically rushing around the house gathering stuff to stay with Julia, Socks followed me.  I kept telling her I didn't have time for her to be acting weird, and that I was busy.  But she was persistent.  And once I finally sat down and looked at her, it became clear she was not going to be around much longer... so we cuddled for a bit in my upstairs hallway.  She was content even though she was struggling, and I told her what a good girl she's been.

She lived a very good life.  I know I haven't mourned her as her lifetime of companionship deserves.  I'm so grateful that someone who has the capacity to think of Socks right now, spent all those hours creating this beautiful portrait.  It's perfect.  And I recognized it as Socks before it was even out of the bubble wrap.  She captured her white mohawk and dribble chin perfectly.  This will be treasured forever <3 

~~~~~

Reed had a really great night and day at home with Gabriel.  Gabriel gets pretty upset when Reed walks away now - even just doing a chore around the house.  And you can't blame the poor little guy =( He only gets to see how dad for a few hours a week.  But we're certainly moving in the right direction.  No update on home nursing yet... but soon.  Hopefully.  Both babies under the same roof <3 Julia video from today in comments.


YouTube: https://youtu.be/Z1jtniO_DKs . .

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


Julia's *only* pages:  Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer


Julia's *only* fundraisers:  T-shirts: https://bit.ly/2MQc0lF |  https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i

Tumbler: https://tinyurl.com/yy6oamph

Car Magnet: https://tinyurl.com/y4nxr3lr


Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd


Chordoma Foundation: www.chordoma.org

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




0 views
follow me
  • Facebook Social Icon

© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!