top of page

March 1, 2019

Julia had a good day today - no barfing, and she seemed really comfortable.  They started splitting one of her meds over several doses, because they thought it might be upsetting her stomach.  Who knows if that actually helped, but she does seem to be feeling better.  Vitals are all great - heart rate back down in the 120s, BP 118/75.  No heart rate dropping issues last night.

I met with OT today (occupational therapy).  I asked why Julia is not a candidate for PT; she said there are a lot of restrictions on her file.  After talking, we believe the restrictions were likely put in place by neurosurgery when she came out of the halo brace and was put in the regular neck brace.  This was also the week after the stroke (when apparently muscles are known to get weak and cause issues).  Since this is when PT was supposed to start, way back in December, there were tons of restrictions due to everything going on.  Then Julia got worse / started comfort care (hospice), so PT was asked to back off completely.  We just don't think those restrictions ever got lifted because it was sort of a clunky transition from comfort care to active treatment.  So the social worker is looking into who has authority there.  We made our wishes of "whatever it takes for her to be a normal kid again" known.

OT checked range of motion and she's happy with everything.  She said there's no sign of a shoulder issue following the stroke.  She explained that whatever side is affected, the muscles that hold the shoulder joint together can become really weak and the shoulder is much more prone to being dislocated.  So until those muscles are recovered, they want to be super gentle.  She checked all around Julia's shoulder and everything seems fine.  

She was SUPER IMPRESSED by Julia's movements!  At the same time, the resident and ICU doctor happened to stop by to talk to me (since I'm not usually there during day shift).  They were surprised and super happy with Julia's other improvements -- moving her left hand(!) wiggling both feet, and talking.  The one seemed a bit skeptical and said, "Does she actually talk to you with her mouth, or is it some sort of sign language?" And I said "Julia, can you say mama?" And she said mama!  (Silently, of course) So that was awesome =) 

Also at that time, OT let the doctors know that she was able to officially track eye movement (with her 'good' eye) - where Julia was able to follow an object on demand.  She can only go halfway -- she still can't look any further left than center-line, but it's a start.  And now it's on her file.  ALSO!  I guess last week they did a test with a 'painful stimuli' (I don't know why they call it that - it seems way worse than it actually is!)  They use a piece of ice on her skin and see if she has any sort of response, such as pulling her limb away, grimacing, or an elevated heart rate.  Last week they tried ice on all her limbs and got no response at all - not even a flinch.  Today, Julia didn't seem to mind/notice it on her left arm, but she DEFINITELY didn't like the cold ice on her legs.  So both OT and the doctors were very happy with that, and it was definitely a brand new reaction.

After this we sat down with the doctors and made some new decisions about her care.  I removed the DNR that was put in place when things were looking bad.  At that time, her cancer was suspected to be SO advanced and spreading SO rapidly, that her heart was expected to stop (literally at any moment).  They explained that restarting it would cause a lot of discomfort, most likely a good amount of pain (possibly broken bones), and it would only extend her life for minutes-to-hours, as the brain pathways that tell her heart to beat would have been under too much pressure to function.  But today they agreed that she certainly SEEMS to be heading in the right direction!  No guarantees without an MRI, but I said we want the DNR REMOVED!  And we want all regular life-saving measures back in place should something happen.  The doctors agreed that was the right choice 'given the new circumstances'!  OMG what a great feeling that was! 

Her counts are all back up to a good level, so she's ready for the next round of chemo sometime next week.  Her MRI is scheduled for Monday or Tuesday, whenever they can find a sedation spot.  I'm SO ANXIOUS!  Her team is so anxious!  Everyone wants to know if this increase in physical movement, day by day, is a sign that the cancer is being destroyed.  We're hopeful.  Cautiously.

And they keep asking me to do trach training...  They keep dropping off the paperwork and I keep throwing it in the trash.  The doctor gently approached the subject with me again.  I told her that the last 'official' word from her team was that Julia was dying in days-to-weeks.  I said if they have OFFICIALLY changed their position, and they HONESTLY BELIEVE Julia might come home someday (in weeks or months), then I will do the trach training.  But ugh.  Gross.  Gross gross gross.  I'm so squeamish and the thought of like... putting things in and out of a foamy throat hole.  GROSS.  

So the doctors and I agreed - if the MRI shows anything BUT negative results (so if the cancer is the same or better), I will do the training.  They said it's not so bad once you learn to do it.  But I tried to put my nieces earring in for her a few weeks ago and I literally got light-headed (and didn't even get it in!)  I'm like a 5 year old. 

So that's it =) Julia did a lot of sleeping today.  One of her Facebook friends sent her the most ADORABLE "baby shark" stuffed animal that sings the song.  Julia seemed to really like that =) I got a few more possible--maybe-laugh motions.  I'll try to get a video of that tomorrow.  Oh, and a few of Julia's BFF's were casualties of poop explosions today.  So both beloved penguin and Wonder Woman bear are now in the bath. 


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

387 views0 comments

Recent Posts

See All


bottom of page