A good day =) Child Life reviewed the suggested schedule and tweaked it a bit to be more developmentally appropriate. Up at 8am, nap/quite time from 12-3pm, winding down between 8-9pm. I really like that the plan is "up and out of bed"! Get this girl in her chair =) The biggie is "limit iPad usage to 1 hour a day". That will be a challenge, but we'll just need to fill the rest of her day with fun engaging stuff. So she woke up without too much fuss at her new wake-up time, and napped pretty well during her nap time. So... day 1 of new Julia schedule has been a success (bedtime success TBD). Medically she's doing great. They did a cuff-down trial early in the day and she did really well. She started getting extra thick secretions as the day went on, so they pushed back her 2nd trial of the day until this evening... but I didn't even know they were going to try two in the same day, so that's already awesome. I believe she's had all three of her therapies: speech and OT in the morning and PT after her nap. It looks like she was sitting up in bed (!) and engaged with all the therapies. Happy and smiling. The nurse commented that she's just had a fantastic day. ~~~~ Gabriel had his doctors visit to look at the lump on his leg. His doctor is confident it's just a lump from banging something (typing this as he's repeatedly climbing on and jumping off of a toy Peppa car...) and that it should go away within a few weeks. Reed and I were going to go see a movie for our anniversary tonight, but I ended up cancelling the tickets. Gabriel was asking for his daddy all day, and I wouldn't enjoy taking any of Gabriel's limited time with Reed away =( So the three of us are at home instead. I didn't think far enough ahead to have any sort of dinner planned, so we're probably ordering pizza. I was going to try to put something cute together for our anniversary, but I didn't have time. So here are the links to the Facebook and non-Facebook version of our albums if you're interested <3 The Barn-Renovation Before/After is pretty cool! Our wedding was on my BFF's beautiful property (well, demoted-BFF because she moved to France >:( ). Our friends and family put a lot of work into turning their barn/garage space into something really amazing <3 <3 Wedding: FB: https://bit.ly/2Pr1y7o | or studiomooch.com/wedding/
Barn Renovation: FB: https://bit.ly/2WlLkOJ | or studiomooch.com/wedding/barn/ ~~~~ No video tonight, but I put one in the comments from exactly a year ago. You can see more of the stuff neck and that she preferred to keep her mouth open (I thought she was just being strange), but it likely relieved some of the pressure. Video features her two favorite things to say: "No!" and "No way!". And I added a clip from Gabriel at the doctors today <3 This boy has really grown up this past year... can't wait for brother and sister to play again. Hoping to get Gabriel down for a visit this weekend!
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********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i Tumbler: https://tinyurl.com/yy6oamph Car Magnet: https://tinyurl.com/y4nxr3lr
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
Chordoma Foundation: www.chordoma.org
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