I’ve been wanting to post an update the past couple of days, but I just haven’t been able to push myself to get it done. It has been so hard watching Gillian go through this right on the heels of a big surgery.

They did not end up placing a drain to remove the excess fluid in her cerebrospinal space because the clotting factor in her blood has been too high-meaning her blood takes too long to clot. The risk of causing another issue—like a bleed in or around her spine—made another lumbar puncture or lumbar drain too dangerous.

In the meantime, they performed an angiogram to look at the veins in her brain. They wanted to evaluate the pressures in her veins to see if that could be causing the excess fluid buildup. Her veins looked totally normal, which is great… and not great at the same time. Now we still don’t have an answer as to why the excess fluid in her head has built up.

At first, I felt reassured that it didn’t have anything to do with her recent surgery, but the last time I asked, the neurosurgeon said, “You know, I’m just not sure.”

The unanswered is hard.

Watching her suffer is heart-wrenching, and not being able to take any of it away is heartbreaking.

I’ve tried to find things to take pictures of, but it’s a wholly different vibe at adult hospitals. Everything feels so beige and somber. This transition into the adult medical world is not ideal.

And yet, in the hard, we continue to find beauty and grace in humanity. We have been so blessed to be surrounded by the most genuine, loving, kind, humble, and gracious community. I know we would not be where we are today without your love and support.

Thank you, from the very bottom of our hearts, for loving our family and being the army we need. 🥹😘❤️❤️