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May 10, 2019

Julia wins major-grump-ball award today. She didn't take her first nap until 6:30pm, and it was only for like 30 minutes. Now she just got done "the worst bath and string change ever" according to Reed, and she's so tired she can't sleep! She even started desatting (lower oxygen saturation) because she was so exhausted. So they put her on some higher vent settings just to help her relax and get comfortable. Grumpy grumpy baby.

But that might be in part thanks to her regular 2am dance parties. Cartoons were off in the middle of the night for a while (to assist with sleep schedule), but I guess they're back on since chemo messed everything up. So Reed's been waking up to a happy dancin' baby at 2am. I'm not sure if it's a certain TV show on at that time or what, but something makes her happy! Even the nurses comment on it =) Speaking of, she's starting to have nurses she really likes! You can tell the difference between her sassy goodbye and her sweet goodbye =) One nurse now gets a sweet goodbye, and one Child Life specialist gets a goodbye wave AND a kiss! Respiratory therapists still only get scowls.

(And several nurses have requested to be part of Julia's primary care team, which is so wonderful to hear! I love that even through her grumpy days they fall in love with her <3)

She LOVES grabbing the suction hose and pretending to suction all her animals noses. And she's also a little helper bear, and hands us random cords and wires when we stand next to her <3 We also found out she knows where all her fancy tubes and ports are - she will correctly point to her trach, her gtube, and her chest port =) I guess it's kind of sad that any 2 year old knows how to point to things like this... but she seems to enjoy the game just as much as asking her to point at her nose or toes.

Today Reed woke up from a nap to a VERY special moment! Speech therapy was in, and doing the first swallow test with apple juice! That's the video tonight. Julia hasn't had ANYTHING to drink (or eat, obviously) since November 14th - the day before her surgery. That was 177 DAYS ago! That was the last time she tasted anything. And today, for the first time in 6 months, she got to taste something yummy again! I thought baby brother made her happy... just wait until you see her being asked if she wants apple juice =)

She got excited and played with the spoon, but she would only take a sip if daddy held it (shocker). The speech therapist uses the stethoscope to listen to her swallowing sounds (this is just the first step in getting her to possibly eat again). She determined that Julia IS swallowing, but it's super delayed - like, 30 to 40 seconds later. This is common in her situation, since she hasn't needed to swallow in a long time... she just kind of forgot how. (Not swallowing regularly is one cause of her mucus issue - she's not swallowing all her normal daily mucus production like the average person does). And learning to swallow again is just worked on through practice. I guess this therapy will now be part of her normal routine. They explained that some young kids just completely lose interest in eating all together, so that's a hurdle we're NOT having to overcome with Julia. "Not this piggy", according to Reed =)

Julia very much enjoyed her few sips of apple juice <3

Pic tonight from the last time she had apple juice, the day before her surgery in November =) And her modeling some Peppa merchandise <3 Video of speech therapy session in comments.


. . . ********************************* ********** 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

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