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March 8, 2019

Julia had an OK day today.  She's throwing up more and is constipated again (likely due to the anti-nausea meds).  The constipation could be contributing to her increased barfing as well.  So they're still working on a balance. 

  The third round of chemo is expected to run from Monday to Friday.  This final round of chemo will conclude the original plan.  I'm not sure what the plan is after...  I don't even know if they have a plan.  I believe she will get another full set of scans once she recovers to see how everything looks, and then they'll determine the best course of continued treatment.  If I had to guess, I believe it will be more chemo.  She already had the surgery to remove what they could, and it ended up spreading into an area they won't operate on (I don't believe that will change just because it shrinks); and as I've mentioned before, they are trying to avoid all forms of radiation for as long as possible -- months, at minimum.  We're right next door to (I believe) the most advanced radiation center east of the Mississippi, so the option is certainly available if they want to do it.  

So symptom-wise, she was more uncomfortable =( but she has continued to improve physically by the day!  She's opening her right eye a LOT now!  (Still no eyeball movement / pupil reaction.) The left eye is open all the way, and the right one is about half way.  Even after all her other limb improvements, I really did believe her right eye would take a lot longer to open... and possibly never would.  I'm just amazed by what's going on with her.

And I think it's SUPER exciting that PT asked us to bring in a stroller! They will concoct some sort of fastening device to keep her head secure, since she likely can't hold it up unsupported, and then they'd like us to wheel her around the floor =)  I'm SO excited for her.  The poor little one has not only been IN the hospital for more than 4 months... she's been staring at the CEILING for 4 months!  Having her upright will help regain her strength and probably make her feel a little more like a normal toddler again.  And once she's able to sit up, we can start figuring out what she's able to PLAY with!  There will be lots of physical considerations, with her spine hardware and weakened state, but I'm sure we'll come up with all kinds of fun stuff.  ...OK, I'm getting ahead of myself with that, but I'm just so anxious to see her HAPPY.  Getting her upright in the stroller is going to be a great first step; and whenever we take her for her first walk (maybe tomorrow?), I will definitely get a video to share <3 

Short medical update tonight.  Since I don't have a video to share, I wanted to include a few more of the wonderful and thoughtful gifts Julia has received.  I think this amazing drawing was probably sent weeks ago, but somehow it ended up in my stack of 'deal with later' mail, so I'm just now seeing it!  It is going to look PERFECT in a frame on her wall.  I love the "Team Julia" bracelet -- it's in my bag to go down tomorrow <3 And I love this awesome and FUN hat made just for Julia!  It is SO soft and perfectly goofy for a little goof goof.  I can't wait for her to wear it!  (And thank you for ALL the adorable hats and bows!  She has an entire collection thanks to all her Facebook friends <3 I'm just waiting for the area of her shunt to heal a bit before I put anything on, that's why she's never wearing anything.  The skin where the shunt protrudes is a bit pink, and the nurses are keeping lotion/bandages on it.  It seems to be causing some discomfort, so I just want to wait to put any pressure on it.  But when it's better, Julia is going to wear all the things! Thank you!)

And many people have asked for specifics on her alternative therapies, especially given her recent undeniable improvement.  I want to make sure I have the most accurate information possible to share - I will do my best to detail everything in a post in the next few days.  In the meanwhile, I am HAPPY to answer questions.  If I don't respond to your message, it means I didn't see it.  A few people are helping sort through my filtered messages, so hopefully I will get to everything eventually.

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