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April 8, 2019

Not a great day.  She's been very aggravated, and is back to throwing up =(  It's only bile and snot, so the formula is staying down (so that's good).  Her mucus is super thick, and she's constantly needing suctioned.  So right now, they think it's her sensitive gag reflex not tolerating the increased snot.  They had started weaning her Ativan again lately, so they gave her an extra dose to help with her frustration and upset stomach.  Mildly effective. She also hasn't gotten much restful sleep.  She's in and out all day, but with the vomiting, they're really in every 30 minutes or so messing with her.  She's entering the worst few days from chemo, and she's more alert than she's been the last few rounds, so I guess no one is really surprised she's so miserable =(

But other than that, no concerns with vitals or anything.  She's making her discomfort very clear, so at least she's nice and responsive.  In fact, she makes a lot of noise right around the trach (annoyed noises), and swats at the suction tools now... so she definitely makes her unhappiness known.  She has PT scheduled 3 days a week, so they should be in tomorrow along with speech therapy.  I know she'll be a little less frustrated once she can at least sit up and play.

I believe the plan is another MRI once she recovers from this round of chemo, and then they will decide what to do going forward.  I assume more chemo, but no one has said that yet.  That MRI should be in 2-3 weeks.

Reed tried to spend time with her earlier singing her favorite songs, but she would just point up to the cartoons and go back to watching them.  She was having none of it!  She wanted Peppa all day long.  (And she doesn't understand commercials, so she just mouths "Peppa? Peppa?" as soon as there's a break in the show.)  It's a little obsessive, but I guess it's nice that there's something that keeps her happy =)  So lots of holding hands and watching TV.

Hopefully tomorrow is a better day for her <3

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

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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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Erin McGahuey
Erin McGahuey
Apr 09, 2019

I hope Julia had a no-vomit day tomorrow. Poor thing!

I'm happy to see the PEC board for Julia to communicate her desires. I work with people with various disabilities. The PEC board/books are a great tool for those who are unable to speak.

Julia, I love seeing you with your stuffed animals. My granddaughter likes Peppa Pig, too. I check your Momma's updates every night before I say my prayers. I say a special prayer for you. You stay strong Warrior Princess!

Much love from North Dakota.

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