Reed and I have stayed right by Julia's side since getting the news from her MRI results. Just looking for this picture to upload, I saw others and was reminded of her awareness a few days ago when she smiled at us. She is noticeably much more distant and way less responsive. Which is expected given the rate of growth. This is just all happening so fast. They've upped all her medicines in the interest of comfort, though she seems very comfortable. We have cartoons on for her when she's awake, and we're either holding her hands, hugging her, or laying in bed with her. She is always being touched.
Medically, since so many people have asked, she's officially on hospice care in the PICU. So no further tests or procedures will be done unless they increase her comfort and level of care. Should a miracle happen, of course they would charge forward with options.
Without giving too many details, we are now personally treating her with an alternative therapy: CBD oil and 'other'. My sister and I did as much research as we could in one night, and you all came through with so much helpful information, and we have a starting point. It is beyond a long shot, and we don't really expect anything... but at least we're trying. We just weren't OK with doing nothing.
I appreciate EVERYONE'S suggestions. I've looked into most while sitting next to her watching her sleep, and brought up many to our team. We appreciate all the prayers, shares, messages, and kind words. Reed isn't into social media at all, and he is absolutely shocked by the response. It makes us very happy during such an awful time to know that so many people know her name and recognize her face, and are praying for her. She's such a wonderful little girl.
Julia is so loved right now, and Reed and I feel the love she's getting from literally around the world. We are still praying for our long-shot miracle. We're trying. And until whatever happens, happens, she's not going to know one second of being alone.
My sister is helping me watch my Facebook account (and this website) to try to keep up with the overwhelming support. All messages are getting read and are getting to me. Thank you.
And a random thought that's been going through my head today: love your kids for where they're at right now... wherever that is. I'm realizing I was always looking forward to the next thing Julia would do: what new word she'd learn, when she'd start coloring, when she could go to the playground, when she'd be able to walk next to me instead of being carried... So much so that I never fully embraced what she was already doing. I wasn't living in the moment, and now my moment is likely gone. Hug your kids... it can change in a heartbeat.