top of page

April 7, 2019

Julia slept most of the day.  She just woke up about 2 hours ago, and right now she's protesting her bath.  She used to LOVE bath time, but now it's done in her bed with wash cloths, and just makes her cold and shivery.  But the nurse is doing a really good job of keeping her covered in towels, and of course Peppa Pig is on the iPad right in front of her face! 

Her vitals have been great today.  Heart rate in the 140s (normal for the week after chemo), ET mid 30s, and BP 107/69.  She hasn't thrown up again today, so it's been two full days of NO PUKES!  This is the longest in a quite a while - easily over a month.  So hopefully the change to her feeding tube location made a difference.  She's expected to get a blood transfusion soon, possibly tomorrow, just as a normal part of her chemo.  She's tolerated them fine in the past.

She's been getting REALLY grumpy and wiggly.  We think now that she's more alert, she really wants to move, and she's probably super frustrated that she can't even turn over on her own (or tell us!)  It's motivation for her to get better, but I can't imagine the frustration! 

And she has started touching her bald head.  She finally has enough strength in her right arm to get her elbow off the bed, so she's been exploring her hairless head quite a bit today.  She's been rubbing it and patting it... looking... interested.  Not sad, thankfully!  She's probably too young to understand she lost her hair.  She just seems a bit confused as to why her head feels different!  (And she finally saw a picture of herself today, and she said "baby", so I think she think's she's baby brother!)

I showed the nurse a video of Julia today.  Julia overheard herself giggling and started pointing at my phone.  So I showed the video of Julia to Julia and she laughed and laughed.  She wanted to watch it over and over and over <3 <3 

Oh, and today I finally had a free day in what feels like forever.  Julia had just gone to bed around 10am, and Gabriel was out with Charlene's family, so I had nothing to do!  So I went to the mall to fix my phone screen that's been broken for months, and buy a new purse because Charlene said mine was too torn and ratty.  I had some time to kill while waiting for my phone and I saw a store with 70% off everything.  I bought a bunch of shorts for little guy, and pretty much one of each shirt (5T) for Julia.  The lady ringing me up commented on the shirts, and I said they're really soft and I wanted to turn them into hospital gowns for my little girl who's been in the hospital for a long time.  She asked her name, and at the same time we both said "Julia"(!)  She had a feeling as to who I was as soon as I mentioned the hospital. It was REALLY NICE to run into a complete stranger who is following her story <3 (And Hi =) I assume you're reading this!) So that just really made my day.

Tonight is a picture of Julia who just got done her hour-long spa session.  She's all clean and toasty under her new Peppa Pig blanket, wearing some new Peppa Pig socks <3 (Her nurse tonight was excited to do her up in all pink for her official update picture!) And a short video clip in the comments of her putting Tiger on her head! New ability!


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

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

281 views1 comment

Recent Posts

See All

1 Comment

Cindy Visser
Cindy Visser
Apr 08, 2019

Oh Amy how far this little Warrior Princess have come, I have been following on Face Book for a while but decided that I wanted to have a look at her website, AMAZING how hard this little girl has been fighting and AMAZING to watch you guys interact with her and how she even with out a voice (for now) gets her point out. I pray for your family and I pray for this little girl and I just know she WILL be a testimony to so many other people and children because of her beating cancers ASS!!!! Love and hugs from South Africa xxx

bottom of page