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March 21, 2019

Julia had a GOOD day today! She didn't throw up once. No one is sure how she goes from her worst vomit day to her best, with no obvious changes, but we're taking it. Vitals are better than yesterday: heart rate 140s, ET high 30s, BP 101/55. (Maybe it's because she was held by daddy for HOURS last night! He didn't put her down until almost 3am <3)

She had another blood transfusion last night (no concerns, just things going as expected). Today they wanted her platelet counts to be 20,000 and they are 50,000 - so she's responding to everything really well. They've dropped her labs down to every other day rather than every day, just to take less blood.

She had a session with Child Life AND PT today! It makes me SO HAPPY to see actual progress being made with the specialists =) Child Life brought in a few sensory toys and got a mild reaction out of her. She's wary of strangers... they usually want to poke her. But she agreed to interact at least a little bit. And PT did another 30 minute session. Still just warming up everything, but it was total body this time - legs, arms, torso, neck. She cooperated nicely for that, and didn't seem to mind being moved around. And after her two big sessions she went right to bed! They really exhaust her, and she's slept since.

Reed got several more high fives today - right arm, from elbow to hand. And if he gets close enough, she's REALLY enjoying smacking him in the face! She tries to grab at his mouth and kind of fishhook him, and she just thinks that's the best thing ever. She smiles and giggles <3 <3 Probably shouldn't teach a 2 year old to hit faces... but it's a habit we'll just have to break later. It's too wonderful to see her happy! She's still bad at aiming, with limited control, but it's already better than a few days ago when she did it for the first time. Oh, and now that she can semi-regularly get her hand up to her belly on her own, she's really exploring all her new equipment! tugging on the wires, fiddling with her chest port, pulling on trach tubing... I guess as long as she doesn't yank something out it's OK. At least it's interesting enough to motivate her to move =)

That's all I have for her today! It was a really good day. Oh, Charlene and I went to the craft store and got several fun things to help with her recovery (and I received a few in the mail - THANK YOU! These will definitely get used!) I can't wait to bring everything down for her to play with =) As for me - I have an appointment with a GI specialist on Monday. Just a consultation, but he assumes they'll get me scheduled for an endoscopy. If I had to order "Julia's Facebook Friends' guesses", it would be gallbladder > ulcer > hernia > anxiety > shingles > herniated disc. So we shall see. Hopefully something that doesn't require surgery... because... I'm just too busy! So I probably won't know more until next week, but I'll be sure to update then. In the meanwhile they have me taking something to treat a stomach ulcer, just in case, but it may take several days to have any effect.

So sometimes, throughout the day, I put notes in my phone of things I might want to mention in my post. I had several lined up, but... I'm going to hold them off for tomorrow because I have something WAY more wonderful! I have a friend whom I know through business. A few years ago, he and his family moved several states away. We've kept in touch through Facebook. I know he and his family follow along with Julia's progress... but this week he sent over something that just blew me away.

He has a 12 year old son, Charlie, whom I've never met. Apparently Charlie is an AMAZING musician. And he's been so moved by Julia's story, that he wrote her a song! He did EVERYTHING himself: he wrote the lyrics, he sang, he played all the instruments, and he even did the recording.

This is just the most pure thing I've ever heard... a (very mature) 12 year old, putting into words the invisible fight of a little girl. It's very real. Some verses took my breath away with the gravity of the words... devastating realities that don't REALLY hit you until they are spoken about your own child. But the song ends with a message of hope, and it's beyond beautiful. This young man is TALENTED, and I am going to cherish this song literally for the rest of my life <3 <3 <3

* * *

Julia’s Song - by Charlie Cozzolino

She scales the tallest mountains though she’s stuck in bed In her dreams she roamin' around but she sleeps instead She's dreaming of a better place that she has always wanted She’s dreaming of a free land to be

She’s a warrior that fights on and never seems to slow The doctors say there’s not much different than some hours ago They say there are days left until she’s gone But she doesn’t stop she keeps going on

You can see for miles and miles Though your eyes are shut tight Though you can’t say what you want to say It’ll be alright - don’t lose that light inside of you

It may seem likely that the end is near You may be full of sadness and fear But she's got a heart bigger than the whole ocean blue And she’s giving it up for you

It’s feeling rough it’s feeling tough, it doesn’t seem to get better And the weight of the world that's on your shoulders always seem to get heavier But there’s a bright light deep inside and it isn’t dimming at all Keep your spirits high don’t let them fall

You can see for miles and miles Though your eyes are shut tight Though you can’t say what you want to say...

I've got a feeling of hope deep inside my bones And this feeling won’t leave me alone I have no idea what she’s thinking But it’s all going on inside her mind

I've got a feeling of hope, now deep inside my bones And this feeling won’t leave me alone I have no idea what she’s thinking But it’s all going on inside her mind

I have no idea what she’s thinking But it’s all gonna be alright

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

Julia's *only* website: Julia's *only" Facebook page: Julia's *only* GoFundMe: Julia's *only* official fundraisers: T-shirts - | 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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