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April 22, 2019

Round 5 of chemo - day 1 of 5. Julia's done well today, chemo is going as we speak; it's a 12 hour infusion. Vitals have been great, no concerns with dropping blood pressures or anything. No barfing. Protesting during her diaper changes and bath time like normal. They've continued doing the breathing tests (cuff deflated / no pressure support) during the day and she does great. They said in the past, being actively on chemo didn't affect her breathing (which is awesome!) so they're super happy with the strength she's building in that department. ‍‍‍‍‍‍ ‍‍

She had another OT (occupational therapy - kind of like physical therapy) session today. Right off the bat she pretended to sleep <3 They called her name, and rattled toys in front of her... nothing. Then Reed got close to her and whispered "Julia?" and her eyes popped right open. Possum baby! Anyway, they worked with her for about 40 minutes. They did have her sitting up for a while but she really didn't like it. They think it's just difficult for her, rather than it's causing pain. I'm sure there is some discomfort in her neck, but they really think it's mostly a weakness discomfort. Today they had a bucket full of shapes and had her pull them out, or reach for them being held in front of her. They're really happy with how she's doing with her right hand. They tried to get her to just hold stuff in her left but she's not really interested. That hand/arm is definitely lagging behind due to the stroke. They'll continue to work on it. ‍‍‍‍‍‍ ‍‍

Oh! And Reed swears she SAID "no!" three times today. ('No' was her favorite word before, and she's most vocal when she's upset, so it makes sense!) He said the nurses heard it to. He didn't get a video because it was unexpected, but if she did, it will have been the first word she's successfully made around her trach! ‍‍‍‍‍‍ ‍‍

And Reed sent this ADORABLE picture this morning. He woke up to... SIDEWAYS BABY! Look at what this little squirmer managed to do! Somehow she wiggled herself 90 degrees to her right, and got herself sandwiched between the short ends of the bed. Apparently she was completely content, practically looking up and backwards to watch her cartoons. But Reed said she was very proud of herself when daddy saw her <3 ‍‍‍‍‍‍ ‍‍

Sharing a video in the comments of some happy waves <3 Oh, and the nurse commented that Julia sure does love to dance and wiggle! I shared one of the million random videos I took of Julia dancing before the hospital... if there was music with a beat, she was just in her own little wiggle-jiggle world. She LOVES to dance! I'll share that one too (looks like she's 13 months). ‍‍‍‍‍‍ ‍‍

*** I get messages every now and then from people asking what they can send that we could use. I can never think of anything. But I just thought of something! I JUST put the last two Wawa gift cards in my wallet today (with how many we received around Christmas time - I can't believe I've almost run out!) But Wawa is a local convenience / gas store, and it has been a LIFE SAVER to have my gas covered by gift cards... so much time sitting on 76 into Philly. So if you're looking for an idea, please know that these will DEFINITELY get used, and are VERY appreciated! Thank you guys so much for staying so involved <3 <3 (My work address is the best address for anything:

YouTube: Julia waving

YouTube: Dancin' machine ‍‍‍

. . . ******************************** ********** 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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Kylie Young
Kylie Young
Sep 13, 2021

Hii thanks for sharing this

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