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May 9, 2019

Julia had another busy day! Her counts have already risen to an appropriate level (so she feels better and has more energy). The next round of chemo will likely start on Monday. I understand it... I just hate how quickly they need to go again. She gets to feel partially like herself for just a few days at most! But something is working, so we can't stop. Vitals are all decent; she had an elevated heart rate most of the day (160s) but she was also VERY busy! Oh, and she's officially a "30 pound tubbers", as Reed calls her. Before the hospital she had hit a max of 26, but she dropped down to closer to 20 when things were going poorly. It's so nice to see her chunkin' up those little arms and legs =)

I don't know much about this part, but lots of people ask so I'll try to repeat what I heard: They attempted to test out the speaking valve today. They have some sort of device that measures how much air can be pushed past the trach, which suggests if she'd be able to vocalize given the right tools. They determined that not enough air passes through (due to how big she is / how big her throat is / how big the trach is / how tight her muscles squeeze / inflammation) so the speaking valve would not benefit her at all. At this time she is not a candidate. They said as she grows she might become a candidate. Another option is to use a smaller trach, but I don't believe that's under consideration right now.

I also asked the nurse if the plan was for this trach to be permanent; she said she can't speak with any authority on the matter, but as far as she knows, it's not. She mentioned they weaned her vent support even further today: during the day, Julia is on a CPAP of 7, and today it was weaned to 6 (and she's doing great). Apparently a typical person has a natural CPAP of 3-4. For reference, the nurse has had children with CPAP as high as upper 20s or so. So... Julia is doing really well and continues to improve =) (CPAP is just a continuous stream of air that helps keep the airway open). As mentioned before, Julia is on minimal vent settings during the day, and slightly higher setting at night - mostly to just ease the effort of breathing so she can get a good nights rest. Once she doesn't need the vent in ANY capacity for several months, they will consider removing the trach. So, not in the near future.

She had another GREAT PT session today! They started by playing with Penguin just to get her moving. Then they moved to the floor and did another 30 minute session playing with colored blocks. She did awesome! They had her sitting on the therapist's lap for a while (picture on left), and they noticed she was pushing into the floor with her feet like she wanted to stand. So they went through the motion and got her on her feet. Of course she hated the effort and the assistance (and obviously couldn't support herself AT ALL), but she seemed to be pretty content "standing" and got a nice long hug from daddy! So the desire to stand and walk again is certainly there!

I arrived just after PT finished, and Reed was just standing there holding her <3 <3 She loooooved it. Her heart rate came right back down, and she was just so content in his arms. He held her for quite a long time, then sat on the bed and held her some more. She eventually had to lay down because she puked everywhere. And then continued to puke... Just tons and tons of mucus, not really food or meds or anything. Doing PT is really getting all those secretions loosened up and then she's a puke-monster. But it's not a bad thing... just part of getting moving again.

And because she was so barfy, I got to assist with a trach change AND a string change. The entire trach gets changed once a week, or if it gets stuff in it (that means they pull it out of her throat and put a new one in). There is much gagging and bucking and puking. And it's awful. I sat on the bed and held her hand and managed to watch about 40% of the procedure... in short bits. Ughughugh. Then later after she barfed on her strings (the velcro ties around her neck that keep the trach in place), I helped change them. The nurse held the trach, and I undid everything, washed her up, and re-fastened them. I even cleaned the stoma (trach hole) and put the pad underneath this time. That's the part I skipped on Tuesday. Which means I had to actually look at it. Which I did. I imagined it was a pierced ear. ...I got through it. But then I was all stressed out for the next hour. Better. I guess.

So a few pictures from her PT session today, and then ANOTHER picture of her chillin' with her legs propped up! Both legs this time! Just watching cartoons after her exercises like a normal 2 year old =) You can also see on the far left picture how much muscle she's lost in her calves after half a year of bed rest. She used to have nice strong legs from bouncing on that donkey all day long... she's got some work to do, but she's headed in the right direction <3 And I just merged a few PT videos together - playing with Penguin, being rocked by daddy, and playing with her animal friends <3


. . . ******************************** ********** Official Links *********** (These are here because of scammers) ********************************

Julia's *only* pages: Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers: T-shirts: Children's Book: Jewelry:

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

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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