top of page

May 21, 2019

Julia had another decent day today <3 She got some blood and only had one small barf.  Her heart rate is trending down, which is great - hovered around the 140s today (120s is GREAT for her right now).  And it can get down closer to 100 in a nice deep sleep =)

Speech therapy came by again, which she hated.  They are great at timing their visits to her naps.  So instead of doing swallowing practice, they tried to get her to communicate with some flash cards (she refused).  Sign language is a possibility for later, but right now, in the interest of minimizing frustration, they're trying to get her to use the flashcards / communication boards.

So speech will be back tomorrow - they really want to capitalize on her good days during her chemo cycle, which should probably start around this weekend.  So the plan is to really up the intensity of the speech therapy during the ~1.5 weeks she's feeling her best.  In the meanwhile, they want to try to make their visits as fun as possible.  Julia has really warmed up to some of the nurses and therapists (the ones who don't poke her!), so speech would like to get on her good side so she cooperates =)

She got the HME put on the end of the trach again today, and did really well, so they already bumped her up to 1 hour at a time, several times a day.  It was difficult to watch the process though... apparently the HME REALLY amplifies her secretion sounds... and it scares her!  It's REALLY loud and she has no notice that it's happening since she doesn't understand they're disconnecting the trach and putting this end on.  So all of a sudden, her breathing is really LOUD!  And then when it scares her and she breathes in louder or faster, it gets even louder.  So it takes her quite a while to calm down... it's sad seeing her so scared and you can't explain it =( She even tries to grab at it / push it because she wants it away from her.  The therapists and Reed do a great job of keeping her suctioned for quite some time after the switch so eventually it calms down.  But ugh... just sad that every step seems to be rough for her.

But, as soon as the vent tubing is off, she REALLY tries to move her left hand!  It gets sooo much more active without the tube laying over it.  Several people have suggested in the past that the tube is likely discouraging her from moving that already-weak arm, because it probably nudges the trach around in her throat which feels funny.  And they seem to be right, because she really responds when the tube is off.   And Reed even said he saw both of her hands together today while she had the HME on earlier.  I've not personally seen it, and he didn't get a picture... but that's awesome!  How crazy to be excited about your kid being able to touch hands.  She even claps "one-handed" now (just does the motion with her right hand).  I will definitely get pictures as her left arm starts going places!

When I got there she was a color-bug!  She even colored all over herself and her sheets <3 Video in comments.  And I put together some cute pictures: Happy color baby, and then SLEEPY color baby, and then I saw her right eye wasn't fully closed so I gave her Tiger-eye-patch, and THEN we looked over and realized at some point she picked up the blue marker again and fell asleep with it in her hand.  This little girl even said NO to cartoons!  All she wanted to do was scribble <3 <3 



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

Julia's *only* pages:  Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers:  T-shirts: Children's Book: 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

255 views0 comments

Recent Posts

See All


bottom of page