A pretty good day for Julia! ...though she got new Julia-proof trach ties, and she got stuffed into a frilly dress (which she hated). She stared really digging at her trach ties again, and she managed to undo them FOUR TIMES in 24 hours. Three of those times she got her trach out. I think Reed heard it twice, and once a nurse was in the room. Reed said he's getting much better at putting the trach back in, and she wasn't distressed with it out. I mean, she gags and chokes, but her oxygen was fine. But I guess enough is enough and they changed the ties they use. So they're not velcro anymore, they're actually tied. Now they need to be cut off. So they won't get changed every time she gets a bath now (unless they are wet). She could still dislodge her trach if she was really tugging at it, but so far everyone thinks the ties are being undone by accident - with her constant scratching. And the scratching is getting worse. Her poor little head has tons of little marks on it. We talked about it being her hair coming in from the chemo. She is probably itching like crazy and she can't get any relief. So as she itches down near the ties, she just accidentally undoes them. They're going to talk to oncology about what sort of creams or lotions they could try. And we definitely felt a few more hair stubbles poking through! Might be up to 80 hairs on the Julia head =) She's only had one barf today, and it was just all mucus. They are trying to vent her g-tube to see if she just has a ton of snot sitting in her stomach. They've tried before with minimal success, but they're doing a long vent today to see what happens. They've also stopped the nightly Melatonin at our request. Someone commented that it gave them nightmares, and then I remembered it gave me nightmares too. So perhaps that's why Julia is so restless at night =( So they have stopped and maybe we'll start seeing some restful sleep. But other than that, she seems to be on the mend from her cold last week. Happy baby =) . Well, she WAS happy until Alicia and I started our fancy photoshoot =) Then she had to go into a big poofy dress and she was not a happy camper. Hopefully the ideas I have translate into an awesome picture and I'll have something to share in a few days. ~~~ Pic tonight of the "convoluted ramp" Reed took Julia on yesterday! Alicia walked through it to get to us, so she took some pictures to share =) I think it looks awesome! Apparently it's a huge hit with stroller and wheelchair kids. And I put a few videos together in the comments. The first one you can see how quickly she scratches off her strings - you can hear the velcro come off, but Reed gets to it before the trach comes loose. Then two more cute clips from her big walk yesterday, with a VERY HAPPY JULIA chasing daddy around in the last one. Look at her little feet kickin!
YouTube: https://youtu.be/098zUafL5IQ . . .
********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
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 Tumbler: https://tinyurl.com/yy6oamph 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