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October 10, 2019

Julia had a GREAT day! And I can say that with certainty, because mommy's on hospital duty this weekend! ...That's because Reed has a man-cold. So he's quarantined at home, and is handling it about as expected. He misses his princess and he has a stuffy nose and sore throat, so he's practically dying. He is also AWFUL at taking care of himself, so I made him a list of exactly what to do and when to do it. You think it's hard to give a toddler medicine? Try getting Reed to swallow cough syrup. Luckily I have "do it for Julia" as my bargaining chip right now. So he's grumbling... but following orders. So I'll be here all day until around 12-2am, whenever she decides to go to sleep. Then I'll go home to sleep and take care of my man-baby (and follow him around with a can of Lysol). But because Julia has this brand new hobby of pulling out her trach, she needs 24/7 supervision. So we're working out a schedule so someone is here in the room with her whenever I'm not. They will play with her when she's awake, and just be here to keep an eye-out while she snoozes. Oh - and ENT decided to NOT go up to a larger size trach, so she's staying where she's at. A few small barfs today, so 2-day countdown to speaking valve trial reset, but anti-fungal meds finished this afternoon so hopefully improvement in the vomiting department soon. I got here around noon and she was taking the sleepiest Julia nap ever. The breathing rate is still off her vent, and she did great! Though her machine kept beeping when she'd drop below 10 breaths-per-minute. My anxiety does not like the beeping... usually Reed is in the room to at least confirm "it's OK". In fact, I was sitting here watching Julia sleep and someone from CHOP called my phone... I still freaked out wondering what happened. But because I have not inserted the trach yet, I'm instructed to just yell for help if she pulls it out. No problem! She had a BIG day with two therapy sessions and another stroller ride! OT worked with her in her chair, and I hear that went really well. I was here for the afternoon PT session. They tried her in a stander for the first time!! (Don't get excited though, because it stayed completely horizontal.) But they got her strapped in and worked on straightening her legs and gently pressing her feet against the floor board. The hope was to incline her just a touch. So far she very much dislikes putting weight onto her feet (can't blame her), so they want to use a stander to slowly get her used to having her feet flat and supporting her weight. Today it was just horizontal, but she actually did OK for the first 15 minutes or so. Then she started fussing. PT was happy with first day of progress <3 I did a one-way video chat with Reed so he could watch =) And then after a short nap, we went on a walk! We attempted a face mask as extra precaution, but there was much head whipping and finger waving, so we abandoned that idea. We just avoided people and took the staff elevators. We went across the way to a small outside garden. It was a beautiful day! She got to see some flowers and vegetables (she loved the tomatoes because she's strange). There were smiles, and claps, and points, and nods of agreement (so... success!). We even FaceTimed Gabriel and he told her all the colors of the flowers we were looking at. Then he "walked" back to her room with her. Her eyes were sooo heavy after her big day, but she swore she wasn't tired. She swore she wanted TV. It took about 8 seconds for her to fall asleep... now she's still here snoozin' away. . In other big news, tomorrow morning she goes down to IR to get her chest port removed! What a major step! it was put in last November before her surgery, so she's had it for almost a year. But NO MORE CHEMO so it comes out! That will be done under full anesthesia. It will be a small incision, and then they have to kind of cut it away from any tissue that it may have attached to. She'll get a few dissolvable stitches and some glue and a patch. They say pain is really minimal (less than putting it in), and it's usually pretty OK in just a day or two. The stitches will fully dissolve in a few weeks. ~~~~ Video in comments: stander practice then zonked out baby then big walk <3

********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

Chordoma Foundation:

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

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