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May 16, 2019

Day 4 of 5 for chemo round 6.  Julia is EXHAUSTED.  She managed her 2am dance party, and had a GREAT time during her first session of music therapy, but other than that, she's been out like a light.  I even tried to wake her up for speech therapy, but it wasn't happening.  She'd wake up enough to shake her head 'no' when I asked if she was still sleepy, but then she'd be right back out.  Vitals are decent - really all we talk about anymore is her heart rate (other stuff has been solid).  Heart rate is in the 140s when she's sleeping, and 160s/170s when she's awake.  It's high for a kid, but it's normal for her on chemo.  She's barfed quite a bit today, but that's also normal.

Music therapy stopped by for the first time and Julia LOVED IT!  The musician played all kinds of kid songs, and she shook the maracas and clanged on the xylophone.  She was trying to turn her whole body over toward this guy, and she gave him TONS of waves, and even blew kisses!  This was by far her favorite therapy =) This is the same guy who often played for her 4 months ago while she was on hospice in that coma-like state... I wonder how happy it makes him to see her today, (alive!), and smiling, and waving, and happily wiggling along to his songs.  I can't imagine this is a super frequent occurrence.  And way back then, he asked Reed if he had any requests.  Reed requested Pachelbel's Canon (odd song for guitar), but this guy just winged it and it was amazing.  So this dude is a truly talented musician, and I find it so heartwarming that he uses this talent to sing 'Wheels on the Bus' a hundred times a day to sick kids.  

So that was all just super awesome.  I can't wait for him to come back <3 

Then speech therapy stopped by, but they didn't do their session.  I've been giving Reed a hard time when he tells me a therapist skipped a session because Julia was tired.  I was like... well wake her up and do it!  But I was there during the day today and got to see her in her chemo sleep... there was no waking this little one up for therapy!  I tried to gently convince her to wake up for about 10 minutes, but she didn't even manage to get both eyes open.  She was just SO exhausted.  So speech will try again tomorrow in the morning hours when she's more awake.

But today is the first time it has been suggested that Julia may never learn to swallow again... So that sucked.  Right now her swallowing is weak and delayed by about 30 seconds.  The risk, of course, is that the liquid (or food) just sits in the back of her throat and eventually goes into her lungs rather than her stomach.  So right now their plan is to just keep doing tests with literal drops of liquid, and see if her swallowing reflex will improve with time.  But they said the reality is it might not.  The tumor location, the surgery location, having the trach, not swallowing for 6 months... they could all be factors.  They say it's not lack of interest - she practically jumped out of bed when they offered her some apple juice the other day.  But I was a little bummed to hear them not-so-optimistic.  Even when she lost the ability of her left arm after her stroke, everyone was like, "Oh with time and practice she'll regain most of that back, no biggy".  But this went immediately to "might never swallow".  Obviously I don't know this field at all, but I can't help but read into it when the professionals immediately jump to a negative outcome.  I can only assume that's because it's what they see.

So, who knows.  They said they will keep trying for as long as she's in the hospital, but they just didn't sound very optimistic.  I really want Julia to enjoy her Peppermint Patties again, so I hope she improves!

And I'm linking this fundraiser - my friend's boyfriend (Corey Carr) is participating with a large community of gamers in Extra Life - a fundraising/gaming marathon to support Children's Miracle Network Hospitals.  Corey picked CHOP, which of course is who has taken such wonderful care of Julia these past 6 months!  His goal is only $100 dollars, and apparently the loser (among his friends) has to eat a really hot pepper.  So I'm hoping we can help him avoid that!  100% of the money goes directly to CHOP, and of course is tax deductible and benefits all the kids there =) I believe his event is May 25th - 26th. Info & Donate:

Picture tonight is a zonked out baby.  She's been wiggling her little butt over to the side of the bed so she can have at LEAST a hand and a foot (usually both) in contact with us.  Her little leg here is stretched out and resting on my arm.  (And someone commented that they didn't realize how tiny she is, because I always post close-ups... so, one full bed shot for reference!) And the video is a few short clips from her music therapy session (content/engaged baby!), and a BONUS clip of Gabriel being a little stinker!  Look at him stare RIGHT at Charlene, reach behind his head, and do exactly what he's not supposed to do!  (That's my boy!)



. . ********************************* ********** 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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I would like to point out that the professionals that are saying that she 'might never swallow' come from the same group of people who just a few months ago gave you the horrible news that she was leaving you. I've been following since December, you're little girl is one heck of a fighter, shes proved that a hundred fold already and proves it again ever day. I don't believe that ANYTHING could stand in that little girls way of coming out on top of this, and proving everyone who has doubts wrong. Patience is the key to seeing the truly wonderful. You are all in my thoughts.

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