pictures of the cute girl:
Two days this week we spent downtown doing doctor’s visits. I don’t know why I get so emotionally geared up for these visits, but I do. This week we saw GI, Endocrine, and Pulmonology.
The first two visits were rough on her. We have to switch over to a non-heated circuit to travel. The lack of humidity in her circuit did a number to her, but that day, thankfully, I had a really good nurse. By the end of her shift we had had several treatments and she was doing well again. Doctor wise we didn’t do much, switched around some feeding schedules to accommodate therapies, but that’s about it. It’s also the day we had to deal with the resident that insisted on going down memory lane with us about one of Bella’s hospitalizations. Because that stay was so riddled with medical errors caused by a fellow and unnecessary sufferings on Bella’s part, I don’t remember it is the same cheery light that this naïve resident remembers it in. Hence the question on children’s hospitals in the last post. Anyway. Sigh. It’s the way medicine is taught and practiced, so it is what it is and I have to left it go.
Pulmonology visit went fine – she is almost always on the vent these days. That is not what he wanted to hear. But it is what it is. Every time we go we get a short little plan of what he’d like to do. But lately she has been all over the place, so we get a different plan every time. We are going to down size her trach. We are going to upsize her trach. It reminded me of teaching the definition of a line – you have to have two points and then you can connect them. We never seem to have two visits pointing in the same direction lately. She just doesn’t follow the norm. So it goes back to this is Bella’s life and she’ll write the book.
At church today in Sunday School (Jason and I take turns going to church and it was my turn today) our Sunday School teacher talked about writing rather than just reading. He works at a college. As an educator, he says, they see that if you just read something, you learn. But if you process it and then write about it, your learning goes much deeper. I can put my faith in Bella’s doctors, and I do, but really the only one doing the writing around here is Bella. She is the writer of her story.
If I sound down, I am sorry. It has been an adjusting week. I find I go through these occasionally. Times when I have to readjust my expectations and goals. Being a planner and a thinker is not always easy with someone who wants to write her own story. I have to let go of where I thought we would be and embrace where Bella says we will be.
Oh – and in fun news! Bella has learned how to give kisses. She leans in, mouth open, and waits for her kiss. Funny, funny girl!
2 comments:
I would think you were more crazy if you never had down days! These kids, as much as we love them and they are an inspiration, are tough! They can be draining, and stressful. She looks so beautiful, and that smile, thats what we live for!
She looks absolutely beautiful! It irritated the tar out of me when we first got Addy and she was repeatedly in the hospital and people would ask if I regretted getting her. Most people just don't get it.
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