February 17, 2019

I'm not sure what to say as far as how Julia's day was.  I want to say it was GREAT, but she did seem a bit uncomfortable...  Some vitals are elevated, so they recently gave her an extra dose of Morphine and Ativan (could be the chemo, could be her increased level of alertness... and she's annoyed at being stuck in a bed).  She's vomited a few times today as well.  This IS a side effect of the chemo, but over the past 3 months, vomiting was usually a sign that she was super constipated (since she's on a feeding tube... it just keeps going in, whether there is room or not). And right after the vomiting she had an explosion out the sides of her diaper (and probably felt MUCH better!)  So we're not sure if she was sick due to treatment or her normal constipation cycle.  Vitals: heart rate 140s, ET mid 30s (perfect!), BP 134/87.

As far as the chemo, her numbers are nearing the bottom.  They opted for a different recovery booster today, instead of what they used last round.  Apparently the last one worked "too well", and I guess that's not always a good thing.  Something about a coagulation concern with too many white blood cells.  So they have an option that might be "less effective" and will bring her levels up to a safe range, but not skyrocket past like they did last time.  So they did that one today.  And she will likely need another blood transfusion in a day or two, as is expected with this chemo.

So she's bit a bit agitated today, BUT she's also done GREAT physically!  She opened her eye again MANY times, sometimes for 30+ minutes at once!  This is amazing!  She found her cartoons immediately, and was locked in =) Both Reed and the nurse saw Julia trying to move her head on several different occasions - it was shaky and not really controlled very well, but it was clearly purposeful movements.  AND while holding her hand, she was clearly squeezing with her fingers!  It was the weakest squeeze ever, but it was definitely there =) This is the first time Reed's gotten to feel her move her hand in over a MONTH.  He was so happy!  

Her trying to move her head is GREAT NEWS.  For Julia's new friends - in mid-November, Julia had surgery to remove the majority of the tumor that was wrapped around her C1 vertebra; because they had to remove so much bone, they had to do a second surgery to fuse her C4 up through her skull.  This is why she was in the halo brace for 7 weeks, and then the regular neck brace for all of January.  They knew her range of motion would be severely limited (permanently), but they said everyone is different, and we'd really need Julia to show us how much mobility she would have.  But she had just started physical therapy (had only two sessions) when she lost control of her right hand, and an MRI was ordered that showed "explosive" tumor growth.  She was immediately put on hospice with days to live. So since the surgery in November, Julia has not moved her head on her own.  She has not even tried to move against this new spinal hardware - we have no idea the range or strength she has.  (This is why we don't currently hold her - if she can't support her neck and we pick her up, we could do permanent damage.) Anyway, so for her to try to move her head for the first time is HUGE PROGRESS!!  They said the movements were very shaky - clearly weak... but they were purposeful and she's trying!  And I'm sure these attempts caused some discomfort, so it likely contributed a bit to her elevated heart rate. 

So such a great day physically for her, but because she's more alert, she's also more agitated.  ... and that's why my feelings on the day are mixed.  I don't want her to be in any discomfort, and certainly not in any pain... but omgosh it's so good to see her use her little body! 

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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