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March 16, 2019

We moved into our new room in the Progressive Care Unit (PCU) =) Guys... I seriously cried walking through the PCU doors for the first time. This is the unit before GOING HOME.  It's still many months away, but it just feels SO much better to be here... this feels like progress.  

The room is WAY smaller - it's half the size of the PICU room.  (I definitely need to bring a bunch of her stuff home!  She has a few bins of blankets, toys, dolls, etc.  I'll just have to start rotating them because we don't have the space.) But it's one of only two PRIVATE PCU rooms.  It has two windows, so Reed can finally see outside!  I don't even think he knows it snowed this year... but at least now he can tell what season it is =) [He seriously doesn't care though - he's very content here, considering the circumstances.] The room has all her same equipment, her regular bed, a private bathroom (rather roomy), and a couch for Reed.  The couch is smaller overall, but has even less space because the back pillows don't come off.  The couch CAN pull out (which is new), but it doesn't really fit with all her equipment.  Pulled out, it leaves like, 6 inches between the edge of the couch and her bed -- not enough for nurses to do what they need to do.  If Reed can start sleeping at night, it might be doable.  But right now Julia is a night owl (like her mommy) so Reed does most of his sleeping during the day.  He's been super happy with the couch mattress topper our neighbors dropped off for him while in the PICU, it's just way too big now.  We'll see what we can do.  

And now that I know we're here to STAY for a while, I will decorate her door and room with some Warrior coloring pages! 

So far, everyone we've met has been awesome: the nurses, respiratory therapists, and the doctor.  The first thing I noticed was she didn't have her iPad holder!  It had to stay in the PICU.  The nurses found a semi-broke one floating around here somewhere, and used tourniquets to rig it up so she could watch Peppa Pig (which she's now been doing for the last two hours!)  It was really nice to see her nurses go so out of the way just so Julia could have cartoons <3 In addition, we have a new social worker, case manager, and child life team.  We were told everyone's goal is to SEND HER HOME so they are experts in moving things alone when the time comes. 

We really like her new doctor. The first thing he said was Julia looks REALLY good!  He said he read over her chart and her history - all her surgeries and complications; that she was on hospice just 2 months ago, that's she's gone through infections / strokes / several rounds of chemo, has barely any physical functionality, etc.  He didn't know what to expect, but was very pleasantly surprised!  She was awake and alert, looking around with her eyes, moving her hands and feet like she does, mouthed some words, appeared to shake her head no (and yes(!) - new motion) to some questions.  He just kept saying she looked great, which was really encouraging to hear!

He was also very interested in the mat she's laying on.  The other people who have come in contact with it didn't really know what to think, and kind of just shrugged or rolled their eyes (not literally).  But this doctor was super interested.  He actually kind of nerded out and used an app on his phone to detect the magnetic waves it emits (or something).  He agreed that it definitely can't hurt... so why not! He mentioned he's always been interested in technology like this.  It was just SO NICE to see her doctor embrace some of the alternative therapies!

Oh, and he immediately asked about things like speech therapists and PT; he asked if they have been involved.  I told him not really.  He said they'd all get on board.  He wants speech, PT, OT, and child life working with her.  That was GREAT TO HEAR.  The PICU staff was fantastic, but I know their real objective is to make sure the kid doesn't die (super useful, obviously)... but rehabilitation is not really their area. So it's awesome that we've progressed to a unit where that's the goal!  I'm so excited for these other specialists to FINALLY be committed.

Julia met her nurse today, and the nurse asked if she's a "Baby Shark" girl.  I said absolutely!  So the nurse sang a verse, and immediately Julia started doing the baby shark hand motion!  OMGosh it was ADORABLE!  The nurse loved it; the doctor loved it!  And while the doctor was checking her vision, he was able to get her left eye to look further left than center line twice (looking at daddy, obviously).  And the right eyeball was definitely mimicking the left, but on a much smaller scale.  So that's really great! (still no reaction to light).  She was also purposefully turning her head to the right to look at Reed when he was standing on that side.  We've seen her wiggle her head for laughing and nodding yes/no, but this is the first time we're really seeing her turn it (and hold it) for a reason.

Medically, stats look decent for the day after chemo.  Heart rate 150s, ET high 30s, BP ... actually it's not on the monitor so I don't know.  She's only thrown up 2 times all day, which is good.  They are going to make sure she stays at this decent level for another 1-2 days, and then try swapping out her formula again.  So at least there is a timeline there.  And she now has her nifty 'shot blocker' to hopefully take the sting out of the booster shots she gets in her legs for the next ~2 weeks.

I was able to talk to the oncologist for a while, and asked what the plan is.  She said DEFINITELY more chemo, which is what I figured.  If this chemo seems to be working, and Julia tolerates it, it will likely continue.  She said expect at least one more round right after this one, and then they might re-evaluate.  So far the only actual concern is the microscopic blood in her urine.  But it's already better today than it was on Wednesday, so they're just giving her meds to help with that and keeping an eye on everything.  They reminded us that next week her levels will be at the lowest so we'll want to be super careful with infection. So far, she's not had a single serious complication from this 'high-complication' chemo.  So she really is doing great with it.

I also about the trach.  I said I feel a bit duped, because everyone told us the trach was temporary - just for the duration of the halo.  But so many oncology moms said nope! - it will be there seemingly forever.  Once it's in, it's too convenient and practical to remove.  I was SO HOPEFUL that "Julia was different" and that her trach was temporary.   But here it is!  The doctor confirmed that it WAS Dr. Storm's (her amazing neurosurgeon) original plan that the trach would just stay while the halo was on.  Apparently they're pretty nervous when a child has a difficult airway (from her throat surgery) AND headgear (preventing the use of normal oxygen masks).  So he wanted it in just for safety.  Unfortunately her situation got real bad real fast, and she just got too weak.  So they confirmed today that they do currently believe it is 100% a weakness issue.  They think that as she regains strength, it's very possible her lungs / diaphragm will get stronger, and she will eventually not need any assistance.  That COULD happen while we're in the PCU and she MIGHT come home without the trach, but they're not promising that nor planning for it.  So we learn all the stuff just so we're not the hold-up whenever she's strong enough and stable enough to come home =)

That was a long update tonight!  Very happy to be in the new room =) Oh - and looking for suggestions on making this RSO not taste like garbage.  It didn't matter before because she wasn't really awake... but she's now making it VERY CLEAR that she hates it, and she's really making Reed fight for it (he's gotten a protest chomp or two on his fingers!)  I think a few people mentioned something before, but I don't remember who and can't find anything in my messages =( So if there are any tips for improving the taste, please let me know <3 

Oh, and just because people asked - I got results from my ultrasound.  My spleen and liver are enlarged, but they don't know why.  Standing orders are ER if the pain gets worse, if not, likely more testing next week.

(And sorry to anyone freaked out by the news article getting shared!  I know the "Downingtown Family Plans Funeral...." [with a picture of Julia] headline is misleading and alarming! Sorry, I didn't pick it!)

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

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Hello! I am so glad that Julia-and y’all- are situated in her new room! How amazing that is. I cried reading about her awesome new doctor and her nurse singing baby shark to Julia. That is so sweet. As far as the rso, my daughters pediatrician had suggested to us when she was taking super gross antibiotics (not the first line semi tasty ones) to try adding some chocolate or strawberry syrup to it. I ended up mixing hers with some applesauce and that worked. It took a little longer, but there was no fight. I’m not sure that Julia can have applesauce, but maybe the syrups will work.

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