Pack your bags, Cora Shabora

Hallelujah, day we have been waiting for... We were informed today that the team is planning to discharge Cora on Friday! Yes, this Friday!

She's continuing to make progress, and at this rate there just isn't a compelling reason not to let her go home. Tomorrow morning she will get more labs to confirm if she's been tolerating changes to her medications, and later in the day they will try increasing the dose on one of her heart meds. If she tolerates that, then Thursday they will try moving her feeding tube from NJ to NG. What we were informed however, is that even if she doesn't tolerate the change to NG, they will re-place the NJ and discharge her anyway.

So she may have an NJ tube, we already know she's going home on oxygen, and she'll be discharged on between 10-15 medications, but life will go on in this new and crazy way, and we will be able to handle it, I know.

I really can see the light at the end of the tunnel. And I really believe it's time for us to go. In December when we were discharged I was filled with trepidation. She seemed so sick and delicate. The difference now is that we know her so much better. We know what to look for. We won't be surprised if we have a couple more hospital stays in our future, but we'll root for the best, and we'll live the hell out of life, even if life later sends us in another direction.

If we know anything, we know that all we have is right now anyway.

The reality is that Cora is a child whom everyone would really be more comfortable keeping in a hospital for the next two or so years. She is very fragile and, as you know, skates a very thin line. We've discussed this at length with various doctors. But I truly believe in the bottom of my heart that life isn't to be lived in a hospital. That Cora deserves an opportunity to live without monitors, without vitals being taken, without the 24-hour a day florescent lighting, and without a large team of people discussing her, in detail, at the start of every morning.

She just wants to live out here. With us. I know it. She wants to see you at the park and the grocery store.

Today Jason and I were talking about the reality of her coming home. We know having her home will present challenges. But at least they will be new challenges. And after all, we're both pretty sick and tired of the existing challenges.

When I told Dominic and Cosette that Cora is coming home soon, they lit up. "But when is Friday?," Dom asked. An eternity away for a four-year-old. But I know it sunk in because on the way home I could hear him saying, "now Cosie, when Cora comes home you can't wrestle her right away. You just have to pet her and stuff like that, because she might not feel good right away."

Tonight I picked up the house and washed Cora's car seat, swing, and bedding. Dominic and Cosie cleared out some toys to make space for the toys that Cora will inevitably accumulate as a child in this household. Tomorrow we'll get the carpets cleaned, and we'll clean the rest of the house. It's almost like we're preparing for a royal visit.

Princess Cora, bravest of the lionhearts, is coming home.