December 30, 2019
I haven’t mentioned the milestones recently, but it's the day before the end of the month, which means we've been in the hospital for 14 months now. I remember December of last year hoping we could be out by Christmas, and that weeks in the hospital seemed like forever. . She's been... OK today. Minimally responsive. Short periods of being awake. Even her good eye is getting less reactive. It has found us several times today, but only for a second or two. The longest she was awake was about 30 seconds to watch Peppa. She'll definitely wake up if she's being bothered, like for trach care and diaper changes, but mostly just enough to make it clear she's unhappy. Vitals are all fine, with ET being the only stat continuing to creep up (low 50s today). She peed a little bit on her own again, but nothing amazing. I asked that a GI specialist take a look at Julia's poop problem, just to have another opinion. She continues to have a LOT of output... which is why it's so weird she's backed up. I've noticed some redness around her belly button, like maybe an inch in diameter all around. More like a rash than irritation. They think it might just be from the swelling. No limb movement other than a small twitch of her left foot when tickled. But she still seems comfortable. The new symptom today is her right leg is cold, from about the knee down. I was getting ready to give her a leg massage and move her ankles around a bit, and when I touched her legs, I found the right one very cold, while the left one was her normal (which is usually quite warm - she's a hot baby). The doctor came in and looked at it, and did... doctor things. Squeezed stuff, watched how it reacted, compared it to other limbs, etc. I'm not sure exactly what they look for, but he said her circulation and pulse is good, and something about how the skin responds is good. So they are now aware of it, but he said it doesn't have the other signs of a clot or anything like that. They repositioned her to see if it will help (so far I don't believe it has), and they will discuss it at rounds. And just to answer a common question from yesterdays post - she hasn't received Morphine in quite some time, so it's not what's making her sleepy. None of her meds should make her tired. This is exactly how she was last January due to the tumor pressure on her brain stem. Julia might be heading for the 1 year past "days to live" mark, just to show she could. Opinionated baby. ~~~~ I think I have a video tonight. Slow internet, give it a min.
YouTube: https://youtu.be/mEPh9Vs7-eE . . .
*********** ~~ Julia Adams ~~ *********** ************** Official Links ************* ***************************************
Julia's official pages:
Website: juliaadamscancerfund.org
Facebook: Julia's Fight Against Rare Cancer - Fund
GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Jewelry: https://etsy.me/2E1mR8i 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 2018. You can find them all on my Facebook page or Julia's website <3
