May 15, 2019

Exhausted, grumpy baby today.  It's so sad to see her lively a few days ago, and then wiped out again.  I wish I could explain to her what's going on =( Vitals are as expected - high heart rate, lots of barfing.  This has become her norm while chemo is active.  Still haven't even talked about how many more rounds she has - this is uncharted territory for her team (meaning, I don't believe they've personally seen this chemo work for her cancer)... so there just isn't a solid plan like with other more common cancers.  She's doing round 6, and the most info we have is that the 2 other successful cases they researched took 12 and 17 rounds.

Speech therapy attempted a visit today, but it was time for a nap and she was NOT having it!  They tried with apple juice AND a popsicle and she wouldn't cooperate at all - she just closed her mouth and shook her head (doesn't get more typical 2 year old than that!)  The top-left pic is her being super grumpy while they were there.  So they tried for about 10 minutes and then gave up.  They did mention that she's slotted for 3x a week for speech therapy, but they are really trying to get her on the schedule for 5x a week, which would be awesome!  The focus really appears to be her coming home sooner rather than later (still no official time-frame), so all the therapists are working toward giving her as much normalcy as possible.  They need to work it out with the scheduling team, but 5x a week is their hope.  And I believe their focus is on eating (possibly more for treats rather than actual nutrition, because she will come home with the feeding tube), and of course some sort of communication. 

After her exhausting 10 minute speech therapy session, she finally fell asleep.  OT came in during that time but they didn't wake her (it wouldn't have been productive with how fussy she was anyway), so they will come back tomorrow.

We're moving forward with looking into a ramp system to get her into the house from the driveway (our first-level doors are up an entire level, no matter how you enter).  So we're looking at options there.  And we're doing a second round with the home care companies.  Speaking of - I am very interested in your personal experiences with home nurses; particularly horror stories.  This is not my realm AT ALL.  I am bringing home a VERY medically fragile little girl - critical airway with the trach, limited mobility with the spine fusion, NO immune system with the chemo, and possibly worst of all... she can't talk.  So she won't be able to tell us if something is going on.  I will 100% be adding indoor cameras to my security system, but I want to be as prepared as possible.  I want to ask all the right questions, and put the right plans/rules in place before hand.  I was oblivious to the apparent reality of some really awful nurses/care providers up until recently.  Everyone at CHOP is amazing, but my eyes were opened during my dad's short stay at the Philadelphia VA (literal scum work there). So if you have any experience with home care, in any capacity, please message me to share your stories, tips, and advice.  Thank you <3 

For the picture, I wanted to find one from exactly one year ago.  So this is Julia loving her baby brother on May 15, 2018 <3 She adored him from the first day we brought him home!!  And Reed did not get a video for me today because she's "chemo grump bucket baby" (his words), so I looked for a video from shortly before her hospital stay, and I found this ADORABLE one (in comments).  She loved this stupid donkey so much, she would bounce herself to sleep.  I was video taping hoping she'd fall onto the cushion I propped up for her.  But she fought it like only a toddler can (Spoiler: she doesn't fall).

YouTube: https://youtu.be/Y1YXL2HM95M

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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