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May 1, 2019

I was so excited by yesterdays post that I didn't acknowledge the day.  The last day of April marked 6 full months that Julia has been in the hospital.  She's not quite 2 1/2, so more than 1/5 of her life has been laying in a bed.  BUT!  It looks like we're starting to break that cycle =) 

Julia has been VERY grumpy today.  She's likely sore and exhausted from her big day yesterday.  Vitals are all fine.  She's barfed a few times on mucus, but nothing crazy.  Yesterday she threw up a TON after her PT session.  They think it's just because she was so worked up, but that all has calmed down.  Her numbers are starting to drop from the chemo, so they'll get to the lowest in the next day or two, and she'll be pretty tired and miserable.

Today she had a visit from speech therapy.  She was not interested in cooperating with their flash cards.  They tried to get her to communicate in whatever way she could - say/sign/nod things like 'yes' and 'no'.  But they made the mistake of holding up a flash card with an iPad on it, and she made it crystal clear that all she wanted was the iPad!  I think she won that fight.  So... speech isn't going as well as PT is =)  And Reed said she was trying real hard to reach the top of her head, but couldn't.  He asked if she wanted head scratches, and she gave a yes nod!  So he scratched her head for her and she smiled real big =) How frustrating it must be to not be able to scratch your own itches!  But she's handling everything so well... even if she has chucked Big Peppa and Tiger a few times.

Medically, they've changed up her vent "sprint" schedule.  They were having difficulty working her 3 vent settings around her random naps, so they're just making her nighttime settings whenever she's sleeping, and daytime settings whenever she's awake.  Makes much more sense, and now there's no confusion between caregivers and what setting she should be on.  But it's also great because it means she'll be on ONLY CPAP for all her waking hours (great for strengthening!) (CPAP stands for Continuous Positive Airway Pressure, and just means she has a small constant stream of air to keep her lungs from collapsing.  Otherwise, she gets no vent support while she's awake; the vent isn't breathing for her, or giving her oxygen or anything).  So... working toward getting better for sure =)  

And with the trach, they have inflated the cuff again since she was vomiting a bit more while on chemo.  I think that will get deflated in the next few days.  They're also FINALLY weaning her Proranolol.  This is her blood pressure medicine.  She had no BP issues prior to diagnosis, and they're sure it is just related to the tumor pressure on the brain stem causing regulation issues... When things were bad in January, this was one of many terrifying things to watch.  Her blood pressure climbed by the day.  I remember it being in the 180s/120s at one point (that's bad), and no medication was affecting it at all.  They kept trying to regulate it and just nothing... they were losing the fight.  So to be told she is weaning off of it now is just wonderful!!!

Picture tonight is Julia "shhh"shing something... we're not sure what.  She said it wasn't for her, Reed, Tiger, or Peppa... so we're out of guesses.  And I included two pictures from yesterday's session.  It takes a lot out of her to do something as simple as sit up in bed =( But of course daddy is always right there for a hug.  And tonight's videos is another from yesterday.  Just after her PT session she was READY FOR BED!  <3 <3 (No video today from Ms. Grump)


And APPARENTLY someone wrote a beautiful song for Julia many weeks ago, and has been trying to share it with me for a while! I finally saw it yesterday, and it's beautiful <3 There's no mistaking it's HER journey (and her cutest word before being admitted was "banana"! Or "manana" in toddler speak <3)


Mananas (Julia's Bananas)-

By Donna Hartt

in collaboration with a group of seniors from Long Island <3 

Mama's calling, the love of a child.Sweet is the air of silent cares that sweep away your darkest fears,The prayers of hope surround the light, as angels work throughout the night.A heart of love, a light of hope, Manana calls will bring you home.

Manana calls that clear the way; Manana calls to light the day.Prayers of hope surround the globe with calls to bring the warrior home.

Share her glory with the weak; watch as she no longer sleeps.Stories told share secrets deep, of wishes, wants, and old beliefs.  The tiger roars, the elephant weeps; snowfall covers the cold dark streets.The morning sun shines through the clouds, sending ice-drops to the ground.

Manana calls that clear the way; Manana calls to light the day.Prayers of hope surround the globe with calls to bring the warrior home.


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

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