June 26, 2019
Julia had a surprisingly good day for day 2 of chemo! She was awake and happy almost all day. Vitals are pretty good - heart rate is starting to climb as it has been doing during chemo (160s). No barfing which is kind of crazy.
She had a BUSY day! She had a session with both OT and speech. OT had her sitting upright in bed and really interacting with one of those fit-shapes-in-holes basket things. She was really enjoying herself and kept requesting to go back to it. Lots of smiles. Then she got like, a 5 minute break before Speech Therapy came by. Reed said he got in the shower and by the time he came out, Julia was sound asleep with toys in her hand. She was SO TIRED she couldn't even make it through the session <3
... and then 20 minutes later I showed up with baby brother!
So we tried to let her sleep, but she woke up to his nonstop talking. "Hello? Hello? Hello? Eat! Yum yum! Hello? Two!" (Julia's our oldest, and we think shortly after 'toddler-hood' started, the cancer also started to grow. So she was super mellow. She really just wanted to cuddle. We were kind of wondering what all the "toddler fuss" was about. ... Now we know.) Anyway, Gabriel woke her up, but she was so happy to see him and was still in a great mood! They got her on her HME (disconnected from vent) and Reed carried her into the playroom for Julia and Gabriel's very first play date! <3
It seriously went as well as it could have. We were in there probably for an hour. We had a few nurses hovering around, and Child Life was fantastic as always. It took Julia about 10 minutes to get comfortable at the table with all her wires and lines (she's on active chemo so they didn't want to stop her hydration - so that pole goes with her, and of course all her emergency trach stuff). So getting her situated and comfy takes some time. Meanwhile Gabriel did normal toddler stuff. He got a little jealous when Reed was holding Julia - he wanted up in his daddy's lap too. But other than that, no tears! Oh wait. Yes, some tears when I told Gabriel he couldn't color on the floor. So he threw and fit and promptly forgot about it. Then they both colored (on paper) and played with play-doh. Julia would point to Gabriel every time he wandered away to do something else, because she wanted him near her <3
Then Julia started wearing down, so Reed carried her back to bed. Where I got to do a surprise trach change (my second one). Reed knew about it, and had conveniently timed dinner for himself and Gabriel at that time... so it was just me and Julia's team. It went really well. I pulled the trach out again, and then did all the string care. It was super fast, my anxiety was low, and Julia didn't hate it. The therapist showed me an alternative method of handling all her neck care (washing / checking for injury / attaching strings / cleaning stoma) that worked a LOT better for both my back and Julia. So Reed and I will work on doing it that way in the future. After watching the first trach change... I never wanted to see it again. But I'd totally do a repeat of today.
And I love all the responses for Julia's business cards!! I'm still working on getting the addresses recorded - I'll have enough for everyone. Though some people didn't specify a name... in which case you're getting exactly what your Facebook name is. And I'm pretty sure some people have like, pets and streets incorporated. But I'm not making any judgment calls =) If you want some of her business cards to hand out, just message me your address (comments don't always get seen). I'll probably get everything in the mail on Monday <3
So GREAT DAY for Julia. We are absolutely going to make this play date a weekly thing!
YouTube: https://youtu.be/w5Ox_lBNsNI . .
. ******** ~~ 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