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January 12, 2019

We're still here. She made it a week! We've had a whole week of snuggling with her, massaging her hands and feet, and telling her how much we love her.

I've actually been laying by her side reading everything you've all had to say out loud. So if you got a heart from me, know she heard your words! Reading your comments, she's heard over and over again how beautiful and smart she is, how she's got sweet dance moves, and how people all over the world are praying for her.

I wish I had better news medically. She remains comfortable. She's opened her eye more today than yesterday, but only for a few seconds at a time. She's focused it on Reed a few times, me once, and she still manages to seek out her cartoons before dozing off again. Her blood pressure continues to creep up, and her breathing progressively becomes more labored. They're still sure she's in no pain and is not bothered with the breathing, but if/when we get to that point, there are immediate options for comfort.

We've had lots of hard talks with the doctors and nurses today. More about what to expect, what our wishes will be, etc. But we continue to do all we know to do in hopes of a miracle. We've upped our alternative therapies. Still safe, always safe for her, but higher medical grade doses. Anything for a shift... some change in direction. But so far we've seen no sign that it's working; and honestly you wouldn't expect it to in just a few short days. We just have so little time to try.

While we were sitting on the couch waiting for the nurses to change all her tubing, Reed noticed the phone wallpaper he's had set since April when he took the picture. It hit us how prophetic it appears. The picture is top down of Julia sleeping in the bed, lit from the window beside her; with Gabriel sleeping in the crib next to her. But it certainly strikes a different chord now. Almost as if Julia is looking down from the heavens on her little brother.

Not giving up. Just touched by the photo and wanted to share.

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Wendy Lynn Nelson
Wendy Lynn Nelson
Feb 21, 2019

what an amazing pic....


Oh sweet girl! We are praying for you here! For a miracle, for comfort and peace, for strength. You are so brave and so is your family. May you all be drenched in peace from God and feel surrounded by His live and all of our live as well.

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