Search

May 17, 2019

Posting super early since I'll be out all evening.  (Alicia convinced me to go dancing for the first time in 8 months!  So we'll be at Prospectors in Mt. Laural NJ from ~8:00-midnight if anyone's in the area.)  I'm sure it will be a nice time.  

Day 5 of 5 for chemo - she's completely wiped out.  She hast slept 95% of the day. Vitals are all acceptable.  She has TONS of mucus (and she had plenty before - partly because she just doesn't swallow normal production), but she gets extra from all the increased fluids during chemo.  So tons of snot barfs.  

Speech therapy did stop by but it wasn't a very successful session.  She sealed her lips and shook her head every time the spoon got near her, even from daddy... so she just wasn't interested.  They tried getting her to communicate with a book.  She was into it for like, 5 minutes, but then she would only communicate "no" and "go away".  So all they can do is come back Monday and hope for a better day.  (Honestly, last day of chemo... no adult would want to do therapy either, and we KNOW it's good for us - no chance with a toddler).

But despite her (assumed) misery, she's perfectly content watching Peppa on her iPad with one foot stretched out to keep in contact with Reed.  Every once in a while she'll peek around her iPad to give him a smile and a wave, but she seems content just flipping through Peppa channels.  

And she has become quite the swat baby to nurses!  She makes it VERY clear when she doesn't want to be pestered (which is all the time).  But she even started swatting with her left arm!  Which is great!  It's a totally useless swat, unlike her right, which can be very effective =) but it's great she's using it.  She's just starting to regain basic control, like, she will attempt to lift her arm and get it through the sleeve of her PJs.  She knows how to do it, and clearly wants to (she happily helps dress herself on her right side), but it just kind of sways and flops around.  She also tried to lift it up when I asked if she wanted a bracelet!  No fine motor control yet.  I've tried to get her to do the finger family on that side, but I've got nothing at all.  And she hasn't successfully hi-fived.  But I did get a squeeze on demand, so it's a start.

Only one happy picture today, and it was from 2am.  Wasn't quite a dance party, but it was still happy baby =) And no videos today since nothing happened other than channel surfing, so I picked a sweet clip from a year ago.  

Actually, a note on that - Julia is my oldest, so I've never gone through the toddler stage.  Julia was doing great with learning words (I assume) up until about May of last year.  She was attempting to say the "normal amount of words" according to parenting articles.  But then, in hindsight, we notice she just... stopped progressing.  Having never had a toddler, I just assumed it was normal to take months and months and months to pick up new words.  But CLEARLY she was(is) smart!  She could color on numbers/ABCs/shapes well before we brought her into the hospital at 22 months.  But you can hear how she communicates in this video - mostly grunts and sounds.  They were effective to the point we knew what she was asking for, but NOW after hearing Gabriel pick up words left and right (it's like he says 10 new things every day), I'm realizing that maybe Julia's progress wasn't typical.  I asked the neurologist if her tumor could have impacted her speech development, and she said absolutely, given the location.  So, that's kind of interesting.  ... Interesting is the wrong word, but I can't think of the right one.  

Anyway, so cute baby video in the comments tonight <3


YouTube: https://youtu.be/jqk0fM4-K64


.

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


Julia's *only* pages:  Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer


Julia's *only* fundraisers:  T-shirts: https://bit.ly/2MQc0lF Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i


Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || 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




0 views
follow me
  • Facebook Social Icon

© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!