August 13, 2019
You know it's a good day for Julia when Reed's first text says, "PT and OT tried to work with baby Hitler. Lasted 10 minutes".
So... roid rage baby is back. The steroids she's on for the few days following chemo cause some impressive mood swings. And of course she's likely miserable in general =( As of today her blood counts haven't started to fall yet, but they should in another day or two. (Her red cell / white cell / platelet counts drop shortly after chemo - it's an expected side effect.) During those 7-10 days she's the most vulnerable to complications and generally rather weak and unhappy.
So playtime today didn't really exist. All her toys got chucked. Eventually she tired herself out and gave some really good daddy cuddles and took a nap. Since her nap she's been a bit better <3 And despite her grumps, she's already been on her HME for 12 hours and is still going strong so she'll likely be on it for a few more hours. So that's 6 days in a row now where she's gone 12+ hours breathing all on her own =)
~~~ Stuff for Julia ~~~
I keep getting asked what Julia could use - and I can't think of any toys. She has received SO MANY gifts! Pretty much anything Peppa-related will be a duplicate. (We have a bin collecting the extra's she's received, and they will go to other kids in need <3) And she has a few educational / interactive toys lined up still for when she tires of her grocery basket.
She has plenty hospital gowns: several real ones (custom made by Facebook friends!) and ~2 dozen over-sized t-shirts that have been cut down the back. I think once she goes on stroller rides, and does more active PT, we might start putting her in a more normal 2-piece PJ set. Something with shorts and a loose top. Oh, and I guess I'm looking for a way to turn these cut-shirts into something a bit more practical for when she's moving. Safety pins are kind of working, but I think I'd like to do typical hospital ties or maybe velcro squares... ties might be more comfortable as her skin is likely extra sensitive due to chemo. But she has like, 25 shirts and I can't sew (and have exactly 3 minutes of free time a day). So if there are any local people who would like to fix up all her shirts, let me know!!
The only thing on our list to get her is a new rolling tablet holder, but they're expensive. The hospital is so limited on these -there isn't a stash or anything to pull from, so we can't replace the broken one she's been using for months. It is being (poorly) held up with tape around the stand, and the iPad is held on with tourniquets (those are the blue bands you see tied around the screen in her pictures... nurses sure are crafty creatures!) Yesterday the stand collapsed which made the iPad fall on her belly. She didn't like that =( But the style of iPad stand that works best in a hospital setting is specific - it needs to wheel (for easy placement), be height-adjustable (to match changing bed height), and have a long arm (to extend across bed / around equipment). Something like this is what she currently has, and it's fantastic: https://amzn.to/2P3zx7I
Someday I'd like to donate a bunch to hospitals in Julia's name. Maybe make a cool sticker to go on them saying they're from Julia. Being able to have a tablet perfectly positioned, hands-free, is everything to kids who are stuck in bed with limited movement. <3
Progress video in comments! She was NOT happy when we told her we needed to change her strings, so she ROLLED OVER to get away! This is the first time she's rolled past halfway since her surgery in November, and she only even started to get halfway a few weeks ago! And then there's a clip of happy Julia after her string care <3 We saw her put her LEFT ARM up unto Reed for a hug, but I was too slow to get it on camera. I asked her to do it again and you can see her trying so hard to get her left arm to cooperate but it's not quite there. <3 <3
YouTube: https://youtu.be/fizDBXOgcBA .
. ********** ~~ 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 Children's Book: https://amzn.to/2CTTN2S 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. You can find them all on my Facebook page or Julia's website <3