October 4, 2019
Early update tonight because I'll be away from my computer for a bit. Julia's had an OK day. She's very tired, and she had two HUGE barfs - like exorcist vomit. I feel so bad for how miserable she is =( We're not quite sure what's making her so sick... could still be the chemo, but possibly the antibiotics she's on for the blood infection. Hopefully everything clears up soon =( This level of puke definitely is not normal for this far past chemo-administration. Reed didn't come home tonight to be with Gabriel, so I was on the phone with him getting an update when she had her projectile barf - it soaked everything so she's still in the middle of a bath. When I had called earlier around 1:00pm she had missed her OT session because she was sleeping... I expressed to the nurse that I REALLY want her to have her daily PT. We need her to be a candidate for rehab, and missing PT so often because she's sleeping isn't going to help. So I suggested letting her name for a few more hours and have PT come back at the end of their shift. I don't have an update from Reed on whether or not that happened. But she was having a pretty good day earlier - no vomiting, just tired. I personally don't think her color looks great in the picture Reed sent (below) AND this one has been "color-corrected" and made to look a little less yellow on purpose. I ask him to tell the nurse my concern about her yellow-looking skin. He says in person it looks OK, and it was probably just the light. The nurse said the better way to tell is the whites of her eyes, and they are definitely crystal clear. But she said they would run tests on her liver just in case. That's all I have until I hear back from Reed. I just didn't want to end up updating super late. If anything new comes up, I'll be sure to include it tomorrow. We need this little love to start feeling better <3 ~~~~ Julia received the COOLEST gift today!! It's a (real) trach training baby doll - it has a real trach, all the pieces to keep it together (strings, pads, vent tubing), her in-line suction, a g-tube, chest port, the leads she always gets stuck to her, a blood pressure cuff, pulse-ox... Bottles, diapers, wipes, feeding spoons to care for the baby. Of course clothes, including a festive Halloween outfit <3 And a patient chart listing "Doctor Julia" as the treating physician - with special flower-top pen so common to doctors offices. And some "good job" stickers for her little patient <3 <3
SO MUCH THOUGHT went into this doll! It has EVERYTHING Julia has! It will even be a good way to get little brother used to all the stuff attached to his sister. I expect a lot of "no-finger" when we try to get her to do something to her baby doll... she SHE hates it so much, but hopefully we (and maybe help with Child Life) can make taking care of her baby doll fun <3 I can't wait to bring it down to her! ~~~~
I was hoping to get another PT video, but I don't have one. I grabbed another daddy-Julia cuddle video though <3 In comments.
YouTube: https://youtu.be/dSAt-TkG7M8 .
********** ~~ 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