Our baby girl has lived on the vent all week. I sneaked her out one day to swing for a few minutes – she just loves that! Love ya babe!
Sunday, May 22, 2011
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.
A therapist asked me this week if I ever question my decision to take Bella. No. She is my daughter. It kinda upset me. I don’t know, but I doubt someone would ask me that question if I had given birth to Bella. But it doesn’t matter to me how she joined our family. She is my daughter. Yes, she is challenging. She is also the most amazing and inspiring person I have ever meet in my life. I love her so very much. And if it’s hard for me to occasionally have to update my life’s plans, so be it. Bella teaches me every day how to be brave, how to have hope, and how to live. I love you sweet girl!
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!
Tuesday, May 17, 2011
Sunday, May 15, 2011
Love these sequence shots:
Before I went outside to do the yard, I moved Bella’s rocking chair so she could look outside. She watched us for a while then started playing with the CAUTION Oxygen in Use sign. These pictures seem like such a statement of her life – cut off, isolated, and unable to do so much, but she finds the joy in life.
Bella’s shipment of supplies comes in these great big boxes – it has become a huge playroom for her. She loves it!
Love the window! Hi everyone!