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February 9, 2019

Julia has been resting comfortably today.  Heart rate 120s, oxygen saturation high 90s, ET 50s, BP 113/73.

I have not been down to the hospital in several days.  My mild cough has turned into a mild cough and mild stuffy nose, so clearly something is going on.  If it's the cold, it's the most minor cold ever... but we can't take any chances.  Reed talked to the staff "hair person" about getting Julia's head shaved, but I'm not sure when that's scheduled for.  Maybe tomorrow.  I'd liked for it to be done, and suggested he just do it himself... but he didn't sound comfortable with that.  If I were down there I'd just do it.  He said the hair person is in high demand, but will stop by as soon as she can.

I don't have a ton to say about Julia, because Reed has been MISERABLE for the last 24 hours!  I feel so bad =( Reed never complains about anything (except when he has a man-cold).  But he says he's just been so nauseous he can't even focus on anything, or even sleep well.  I'm afraid he has food poisoning.  I went out with Gabriel and Charlene's family on Thursday after we got the good news, as sort of a celebration dinner.  We brought the left-overs to Reed, and I'm worried we let them sit out too long before putting them in the fridge.  It was a lot of different meats.  He ate it the next day for lunch (yesterday), and it was only about 6 hours later he started getting real bad nausea that just got worse and worse over night.  He sounded AWFUL on the phone just now =( But no other symptoms... just nausea.  So I really hope that starts to go away soon.

But as far as Julia - no concerns medically (no fever, vitals are solid, and eyes responding as they have been).  In GREAT news, several people have seen her move her shoulders, neck and head now! - small movements, but they are 100% positive no one was bumping the bed.  And the BEST new news, is in the middle of the night, Reed noticed her left eyelid was not closed all the way.  So he used his thumb to open it and saw her pupil kind of darting around.  This is the FIRST TIME it's moved (rather than just reacted to light) since she stopped responding completely several weeks ago.  He closed it for a minute, not sure what to think.  Then he said he opened it again and she turned it to look right at him!  Of course he talked to her, told her what a good girl she is, and gave her a million kisses =) So she hasn't OPENED it on her own yet, but WOW.  He's 95% sure it was purposeful movement directly to him =) 

I want to run right down there and hug her SOOO BAD.  But I have this stupid stuffy nose and I have to stay away. So that was the day!  He hasn't been by her side as much as usual because he's been so miserable, but we cannot be HAPPIER about more improvement in purposeful movement!!

And I'm including a message from 'Aunt Charlene', who just re-activated her Facebook to be a part of Julia's story on here.  I usually stick to medical updates, so I thought Charlene's message would be useful for some more of the lovey-dovey stuff that goes on with our little fighter <3 


I am Julia's Aunt Charlene (the one that Gabriel is temporarily living with) I try to read as many of the comments as I can. I noticed some people asking if Julia is talked to or sang to. So to put your minds at ease.....YES….I go see Julia EVERY chance I can. When I am with her, I sing constantly to her.... especially Jesus Loves Me. I do "This Little Piggy" with her toes, count to ten and sing her favorite kid songs like Baby Shark doot doot, ABCs, and other nursery rhymes. I talk NON-STOP to her about everything. I tell her all the latest updates on her brother and all the new words he can say. I catch her up on what her cousins are up to and all the things we are going to do when she is able to. I tell her ALL the time about how much Jesus loves her. When I was brushing out her hair, I made sure to tell her that Jesus put every hair on her head and he will surely replace them all in his time. I also clip her nails and toenails and paint them, I washed and soaked her hands and feet in warm water and massaged them with lotion just 2 days ago. I lay next to her and hold onto her and kiss her head. I hold her hands and I just pray. I exercise her arms and legs in hopes to somehow help them stay a little stronger. I think her care team knows now that when one of her leads beeps it's because I am on her bed doing one of my usual things with her. She is my little warrior. I miss her so much. I love her like she is my own and I treat her just as if. ~~~~~~~~~~~~~~~~~~~~ 

. . . ******************************** ********** 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 fundraiser:  T-shirts -

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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