June 15, 2019
Another really good day considering all her levels are pretty much 0 from chemo. She's tired, but that's really the only side effect... which is amazing. Her numbers should stay low for another day or so and then start rising. Our assumption is still an MRI when they're back up closer to normal... so could be as soon as this week. It will be about 2 months / 3 rounds of chemo since the last one.
They even upped her HME breathing sprint again, despite what should be total exhaustion. She was doing 2x a day for up to 3 hours each. Yesterday they switched it to 1x a day for 4 hours, and today she went for 6 hours! She played and napped no problem with just the HME (meaning the vent wasn't helping her breathe at all - it's not even connected).
I really love how well she's doing learning to breathe on her own again. They seem to be increasing her effort every other day or so. But I understand when we take her home, that progress stops for quite a while. They will keep her on the same setting for the final 2 weeks in the hospital, and the first 2 MONTHS at home! I mean, I understand why they do it - so much is changing they don't want to add that factor in... but I'm going to hate seeing the progress stop. She's just doing so well. And I want this trach OUT. I just hope she continues doing great for as long as she's inpatient. (Still no date yet - working on home care schedules and training.)
She has started tucking Tiger into bed with her, and she's also been helping the nurses when they put Vaseline on her lips =) She likes to get it on her finger and then SHE puts it on her lips because she's a big girl <3
Personally, I'm not in a fantastic mood today... I'm sure father's day being tomorrow has something to do with it. Most to do with it. My brother and I should be texting my dad last minute letting him know what restaurant and movie we will be taking him to. Possibly Godzilla and Bahama Breeze. But in an effort of not really dwelling on it, since I definitely don't have the head space for that right now, while Reed was home last night, Manny, Megan, Reed and I played some games and toasted to dad with his really expensive scotch. We said some nice words on video that I was going to share, but apparently I had my finger over the microphone 50% of the time so it's not audible. If I find time to subtitle it I will share it tomorrow. But I took screen captures of before and after the drinks for some laughs. Dad would appreciate. That pic is in comments.
Video in comments is from when we got back to Julia after being gone for a day. We walk in on her shaking her head no when the nurse said she needed to leave for a few minutes <3 She has warmed up to many of her nurses! They are all so wonderful with her. And then she sees mommy and that's the best thing ever for like 0.25 seconds until she sees daddy.
But, possibly due to the melancholy day, I added on another video that's not so happy. I guess it's not awful... Well, I find it really sad. Reed doesn't think it's a huge deal. But it's Julia seeing Gabriel. You can see how excited she is for her baby brother because she just loves him so much... but Gabriel doesn't even know who she is =( He couldn't really care less. He just wants to get down and play. He has no idea this is his sister, because the last time he was home with her ~8 months ago he wasn't even 1. So I think it's actually pretty heart breaking to see the look on Julia's face... but maybe I'm reading into it too much.
I try to show Gabriel videos at home, and he has a cloth picture book of Julia (which he never looks at). I'm open to suggestions if anyone has them - just to get him to know her. I mean, whenever she comes home they will finally get to play, so maybe it's not a huge deal. It probably bothers me more than it bothers her.
. ******** ~~ 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
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
Toasting to dad. I talked about how he always had time for everyone Reed said he appreciated his desire to educate anyone willing to learn. Manny toasted to Brad taking him under his wing and setting him on his career path when he came out of the Army with not much direction. And Megan shared a memory of the 5 of us going hiking, and for some reason I didn't complete the hike. I guess I just turned around and went home haha. I don't even remember that. But she said it was a good memory of the 3 of them and dad at the top of the mountain <3 (PS Scotch is nasty)