It's starting to get to the point where I don't have much of an update around 10:00. Reed and Julia's sleep schedules are so backwards... they're going to bed around 7am, and sleeping until 5pm or so. So on days I'm not there, I usually call around 9pm and they've only been up for a few hours!
Julia's vitals remain stable. She threw up a few times around 5am, and then was good all day (or "night"... for her), but then had an episode of projectile vomiting a few hours ago (that's new). Reed believes it's because they gave her all her medicines at once. Why on earth they would do that... I have no idea. She gets a TON of medicines. And about 5 minutes after they were all administered, she started shaking her head (like she does now before she pukes), and then it all came flying out. It almost hit Reed who was sitting next to her! So that was a whole thing, but then she felt better after, and has been fine since. So hopefully they've officially noted on her account to NOT give her 50 medications at the same time! Poor princess =(
But other than those two instances, no vomiting, so the formula switch seems to maybe be going OK. They're really trying to get her sleep schedule back on track, but it's another area I just don't think they're doing things... optimally. Like - she's going to bed at 7am right now, and that's been consistent for a while. So if they're trying to get her back to a normal schedule, they should slowly get her to sleep earlier and earlier, right? But they're still giving her her sleep aid at like, 10pm. ...So she takes a 40 minute nap and gets back up! This is like giving the average person a sleep aid at noon. It's just not going to work. I suggested to Reed that they give her the melatonin at like... 5am for a few days, then 4am, then 3am. (I feel stupid even saying I "suggested" this, because it's common sense!)
But it's super sweet when Reed wakes up and finds that Julia has been up for some amount of time on her own. She is SO EXCITED to see him! Every time. She smiles so big, and says "dada" over and over. She just loves him so much. And he loves HER so much. He hasn't complained once in his 5 months in the hospital... more than that, he tells her every day that "today was the best day ever", and he had the best time spending it with her. Their love is so special.
He does miss his little guy though =( He's completely missed months 11 through 16 now. Gabriel is changing so much. I know Reed is really looking forward to being back with both his kids. But he'll wait patiently for that day - for however long he needs to.
And he sent me this WONDERFUL video last night! It's such a normal toddler motion... but it means so much to see her do it. She's regained enough strength and dexterity in her hand to rub her eye! She's been trying SO HARD to touch her face this last week, and she can finally do it! Her right eye waters once in a while (and we dab it and put drops in it), but imagine if it was just itching and she couldn't even tell anyone! Now she can rub her own eye again, and she looks so adorable doing it <3 <3 <3
. . . ******************************** ********** Official Links *********** (These are here because of scammers) ********************************
Julia's *only* website: juliaadamscancerfund.org Julia's *only" Facebook page: facebook.com/JuliaAdamsCancerFund Julia's *only* GoFundMe: gofundme.com/juliasfightagainstcancer Julia's *only* official fundraisers: T-shirts - https://bit.ly/2MQc0lF | 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