April 5, 2019
Day 5 of 5 of chemo.
Just had a MUCH better day today. No concerns at all, as far as vitals. Heart rate is back down into the 130s, and BP is back to 100/70 or so where it has been. All labs that have come back have been negative or normal. So at this time, they aren't going to do the spinal tap (so glad they held off). They need to keep her on the antibiotics for one more day until those labs come back just to be sure. So they're just keeping a closer eye on her today, but the official stance is that her body is just struggling with the chemo and needed some extra help.
She's been very tired, as expected for the final day of chemo. She's slept most of the day, and just woke up for 10 minute cartoon sessions every few hours. OT came in while Reed was sleeping and said they did some texture-squishy things to work on her hands and grip. Apparently she wasn't super interested. (It's also the middle of the night for her, with her sleep schedule - anyone would be annoyed being woken up at 3am to grab things!) They said they also did some finger painting... but there is no evidence of that, so we're assuming it also didn't go well! That would have been sweet to see though =) Can't WAIT to see her playing with something like that!
The nurse was trying to get some smiles out of her today, with little success. Finally I guess a song came on the TV during a commercial and the nurse started to dance. She said Julia wiggled every bone in her body trying to dance with her! She smiled and giggled!! The nurse was so happy with that! She put in Julia's file to get music therapy involved again ASAP! (The last time music therapy was involved, were the days after Julia was put on hospice... and he would come in and play "Somewhere Over the Rainbow" on his guitar and I wanted to shoot myself. No exaggeration. It was the most depressing thing in the world.) So I am SOOOO HAPPY that music therapy can get involved again for a positive reason! Julia has always been a dancing bug, and I love that she still loves music <3
I'll do more of a medical update tomorrow. This update is already late, and I know some of her friends start to worry when 11:15 rolls around with no word <3
Oh, I was looking through videos and I found this one of her in the hospital, just a few days before her surgery in November (23 months old). She was playing with play-doh for the first time, and thought it was really great! We were impressed that she could form alphabet letters... we certainly didn't teach her that! But oh man I miss this voice SO MUCH.
YouTube: https://www.youtube.com/watch?v=Tpb1rPokRjE&feature=youtu.be
. . . ******************************** *********** Official Links ********** (These are here because of scammers) ********************************
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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
