The Monster

Thank you. I need to tell you that I feel better. Thank you so much for your prayers and your comments. You are wonderful friends.

Today another mother that I've been talking to stopped by. She knew I'd had a bad day yesterday. When this all started for her, a friend gave her an angel that said, "God only gives you as much as you can handle, I just wish he didn't trust me so much." My first thought was, but I can't handle this!

And I probably can't. But you are there. And so is God, although he's not doing what I wish he were. I was so very much wanting to just give up on God yesterday, but without thinking, I return to prayer and praise. I don't want that statement to give me any credit. I'm saying that on my own I would really choose to give up on God and walk away. Though this situation hurts horribly, it's no longer dangerous. Alicia isn't diagnosed with anything she's likely to have trouble with for the rest of her life. On paper, there isn't much to be discouraged about. And I give up. But God and my friends sustain me. Maybe this is how Alicia feels. And it feels so good. Safe. Thank you. We really couldn't do this without you.

So no, Alicia isn't coming home with more nursing. There's no new target date. Yesterday she had an x-ray of her lungs, the first in maybe six weeks. They found a cyst in one lung. Now, I think of a cyst as a growth, but as I understand it, this is damage from her chronic lung disease, which is mostly caused by being on the ventilator. It doesn't get smaller or heal, exactly. But the body grows new lung tissue until age 7 or 8, so comparatively it will shrink. And this is our monster. This cyst is most likely the main reason why Alicia lacks the stamina to feed more by mouth. It's nice to have a monster you can name, even if we can't kill it.

Alicia's NNP really wants Alicia to take at least 75% of her food by mouth for a few days in a row before she can come home with a feeding tube. And coming home with a feeding tube is not an option that she would give to very many parents, so I should feel complimented there. Alicia takes maybe 50-60% of her food by mouth most days this week. Knowing my daughter, I think this could be two more weeks. Her progress really is that slow. I should have known, or acknowledged, this before, but I always just want to believe that Alicia will suddenly be sent home.

Some day.

Another thought. I have a friend, a young mom in ICC with me, who is thinking that she needs to move to the cities now. She's from out of state and alone. Her son has a diagnosed disease and will be at Children's for a very long time. When he does come home, he'll be on all sorts of home support and need to stay in the Twin Cities for his care. For now she's living at the Ronald McDonald House. If you feel like you would like to help her with housing, a job, or friendship, please pray about it and let me know.

Thank you.