June 3, 2019
Mixed bag day for Julia. FUSSY morning. Her nurse was VERY patient with her... but she sure was pushing buttons! Everything she could reach just flew across the room. Reed even put her in a coloring time out. He took everything away so she'd take a nap. It's so much easier to put your foot down when they're not so sick =( A little one her situation makes you just want to give them everything they want even though it's not best.
We experienced "never again" in January, so now it's so difficult to NOT give her cartoons when she wants them, or crayons, or cuddles, or her iPad. I just want her to be as happy as she can be. But now we're having to balance that with raising a kid who isn't spoiled and bossy... or grumpy from being tired. (It even makes me sick to my stomach thinking we're "raising" her again... like, to grow up...) I still don't want to hope for anything, because her future is just so unknown. I don't think much past today.
And today we had a GRUMPY TODDLER.
So morning and afternoon were not great, but evening went pretty OK!
Her bath and string changes went surprisingly well. They think she was just a bit more well rested. She did not do either breathing sprint today. She didn't tolerate the first one because she was too exhausted, and they didn't try again. Hopefully back to that tomorrow.
Speech came in and had a really great session! They use a slightly different picture board than we have in the room. Theirs conveys more abstract thoughts, rather than "point to what you want". Things like yes / no / more / I like. And for the first time Julia actually responded a bit to the session! She even starting mouthing 'help' (with a big ol' P smack at the end). She never said help before we brought her in, so that's a completely new concept for her and she's saying it in the right context - like when she drops a crayon. So she'd mouth "Help", and they'd ask what she needs help with, and she'd point to the picture of the crayon. So HUGE communication progress today!
Oh, and Reed was on the computer while she was watching TV and he HEARD her laughing! He looked over and she was laughing and pointing at something silly on the TV =) So she's really learning to vocalize around her trach <3
** Fundraisers **
It's been a while since I've posted about fundraisers. Many people have asked to do fundraisers for Julia, and honestly we got into some issues in January with (lots of) fake ones, so I had to politely decline everything. As I've "met" people through the months of Julia's updates, we've been able to better verify the authenticity of some recent ones. PLEASE - no obligation at all - we've been the recipients of such generosity. But I keep getting asked about the car magnet ribbon I have, this custom t-shirt design is awesome, and I love the hand-made Julia tumbler <3 (Sorry if I missed your fundraiser offer over the past few months... I pretty much don't even remember January through March.)
All proceeds come directly to us, and of course will be used for Julia's care (alternative treatments, coming home(!) modifications, and necessities that aren't supplied by home care / insurance are next up on the list.) Car/Fridge magnet ribbon: $12 on Etsyhttps://tinyurl.com/y4nxr3lr Team Julia t-shirt: $22 on Graffitee:https://tinyurl.com/y55lh988 Tumbler: $30 on Darcie's Craftshttps://tinyurl.com/yy6oamph
Tonight we have happy Peppa-on-head Julia from just after her 2nd nap, and happy asking-for-Peppa Julia after her bath <3 I didn't get a video from Reed today (I'm not down there on Mondays), so I picked one from a year ago - my dad just after his first brain surgery playing with his favorite granddaughter <3
. ******************************** ********** 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 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
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