May 23, 2019
That's Julia's new name. It's insane. So. Much. Snot. I don't know where it's all coming from. They still say it's likely a mixture of a bunch of stuff - body's response to chemo, extra fluids, having the trach, and not swallowing. No one is concerned, it's just SO MUCH wiping and suctioning! But even with all that going on, she did so well with her breathing sprint yesterday that they already increased it to 2x a day for 2 hours each. She's improving quickly!
Wound care came in to look at a small blister on her neck, under her trach strings. So much effort is put into NOT getting skin irritation there (since you can't just like... not put the strings on). But Julia is constantly drooling/snotting/barfing onto that area, and even with packing it with gauze and changing the strings constantly... some moisture must have sat there, or maybe the strings were too tight. So they treated it, and decided to loosen the trach strings another 1/2 finger width just to give it some breathing room - now that she has a slightly longer trach, it's not likely to fall out with things not quite as snug.
Little miss Julia didn't sleep at all last night!! She was up until 7am. At some point in the early morning the nurse showed her a new shark tail blanket that a Facebook friend sent <3 Julia thought this was THE BEST THING EVER! She was the happiest squirmy bug when she found out she could put her legs INSIDE the blanket. She kicked and smiled and wiggled all over the place =) I understand there is a DADDY SIZE shark tail as well... but so far Reed hasn't gotten in it (that I know of!) Even the nurse told him how HAPPY it would make Julia to see her daddy in the shark tail next to her. We'll see if we can make it happen!
So this little one slept from about 7-11am and then was up ALL DAY. She was soooo tired and really needed a nap but just wouldn't go to sleep. She was so fussy, and she's quite the fighter when she's tired! Even the nurse commented on Reed's "unwavering patience" when it comes to her. Everyone loves her, but man, she was really trying to push some buttons today. She was just an over-tired 2 year old. But the good news is, she's doing GREAT with full-leg kicks! Huge progress!
In other news, we are looking into all reasonable options to get our home ready for her. We own a log cabin on a pretty steep wooded lot. This is the opposite of a handicap-accessible home. So we're looking into ways to get her from the driveway to the first floor (looking into ramp systems / lift systems), and we're looking into ways to give her a safe and semi-private area on the first floor to live for the foreseeable future. Mostly just trying to create a Gabriel-safe area. Private, quiet, and a place for the home nurse are bonuses at this point. I guess the priority is making it so Gabriel can't like... yank on all her stuff. Our house is not very large, and the floor plan is unusual. We'll make it happen for sure, but I just don't have the brain power to be making these kind of decisions right now. Running on empty. (Apparently my hair is noticeably falling out - according to my doctor. I'm sure it's just stress.) Definitely wish my dad were here... he'd have a solution for everything.
Pic tonight is AWAKE SHARK ATTACK BABY, and a bonus pix of her 1 year ago (of course with her daddy), and Gabriel in his awesome new PJs a Facebook friend sent! They are amazing and soft <3 I tried to get a good video of Julia kicking her feet - she didn't do it quite as much as she was a moment before... but she's progressed so far from a few toe-twitches in February! In comments =)
. . ******************************** ********** 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