Worry

I missed my freeway exit.
I dreamed that I had to be at two doctor appointments at once, and could find neither of them.
I called Liam Ronin and vice versa. Repeatedly and often.
I ate the cookies. All of them.
I couldn't remember whether I shampooed my hair.
I asked Steph to go to "Zamzows" (uhh....Zurchers) for party supplies.
I dreamed that my favorite doctor was older and fatter and indifferent. In my dream, I tried to cry out and there was no sound.

So then, being the psychologically savvy woman that I am, I said to myself, "I must be more stressed out than usual." Ha!

You know, when you do this work every day, it's easy, and probably necessary, to lose perspective on the seriousness of it all. Strange things feel uplifting to me....like when 6 of Keira's doctors/clinicians agree to come together for a care conference regarding her treatment on a Friday morning. Like being told that it will probably be a good idea for us to take K out of state to a teaching hospital for a second opinion. It's validating. It's affirmation that, oh yea, what I'm doing is hard. There's a reason I'm eating all the cookies.

So, as always, feeding has been a major issue. Keira doesn't seem to digest her food very quickly and it's hard to keep enough food and water in her so that she stays healthy. For some reason, she's seemed to have an even harder time recently. More vomit than ever and nothing seems to help. Her 3rd (yes, 3!) birthday was Wednesday and was also supposed to be her first day of developmental preschool. However, we kept her home, and will be keeping her home indefinitely, because we didn't want to add any new stressors, no matter how pleasant, that could possibly set her back even more.

Yesterday was really hard. If you asked me (like you do), whether I was daydreaming up a program for Keira's funeral, I would lie and tell you "no." When the doctors are saying they don't know what is wrong or what to do, it's hard not to picture her wasting away. And my reaction to thoughts of her death have changed over time. I mean, I still know, that in the end everything will be okay, but the idea of her dying now seems less like the natural order of things and more like a really unfair set of circumstances. How could this beautiful girl, with an easy laugh, who beams at her brothers, lights up a room, and communicates to us her likes and dislikes, painfully waste away? That's torture. But since you asked, I suppose that her funeral would include dancing and you all sure as hell better be there because the one thing I would need to know above all else is that my sweetheart would never be forgotten.

By the end of the day, I had had extensive phone conversations with two different doctors. We have a plan now, so today feels substantially better. K will have some imaging done on Monday in order to rule out a herniated esophagus. After that, we'll go ahead with a GJ tube (which will mean 24 hour a day pump feeding and no bottles) and/or a new fundiplication. I was comforted when I was able to tell my favorite doc that I'm willing to try anything for her if he thinks it's worthwhile, but that I'm not expecting a miracle cure. I told him that I want him to tell me when he feels like we are at the end of our options, and he assured me that we aren't there yet. (He'll probably be younger and cuter in my dreams again.)

We've been keeping K home most of the time. Just trying to reduce stress. She's mostly ok during the day, although a bit lethargic. We're planning a birthday party for her tomorrow and Jeff and I discussed canceling it altogether. We are going to go ahead with it. Maybe in part because we never know if there will be a next one. Stay tuned in a few days for a happier post with lots of birthday pics.

I want to thank all my friends for being there for me. For reading and replying to my random texts of panic, with little back story to make any sense of it. I love you all.