A New Way of Standing

We have had a couple of appointments at Shriner's and have been very excited by the access to equipment that they have. We went to Shriner's again this past Monday and had another good appointment, and they sent us home with a dynamic stander. It is basically a standing wheelchair. 

The awesome thing about this is that Brynlee stands in it, so she is getting her standing and her weightbearing in, but she is also able to move around and not be stuck in one position. So far she doesn't like spending an extremely long time in it, but she has been doing really well with it. The one downfall to the contraption is that it is extremely heavy, at least it is heavier than I was expecting it to be, so I don't know that we will take it anywhere very often. We will have to see how things go with it, but at least it is an option for Brynlee for now. Now if only we didn't have a multilevel house, then she would be able to go all over the place. Too many stairs in this darn house! 

Today we went to outpatient physical therapy in Bountiful and had an okay appointment. We set some new goals, and our therapist acknowledged that her goal for Brynlee is to get her walking in the walker. Thank heavens! I wasn't sure that they had this goal for Brynlee, so it was nice to hear her actually say that it was a goal. We spent absolutely no time today doing tall kneeling at therapy. It was a miracle! Brynlee, however, needed a little bit of convincing with the walker, but hopefully we can get a walker at home soon, and she can become more familiar with one and work with one a little bit more.

In other news, I am supposed to do a monthly urine test for Brynlee's cancer, even though some months it just doesn't happen. Oops! Anyway, this is the test that detects a specific secretion in the urine that a tumor would produce and can be an indicator of tumor activity or growth. I was able to get one into the lab at the end of December and thankfully everything came back normal, so we are expecting that her upcoming scans should be good; however, a lot can change in a month, especially with cancer and especially with neuroblastoma. I am actually more worried about sedation for the scans - we had a rough time the last go around. 

So I was looking through my calendar the other day as it started to fill up with new appointments, and it got me wondering about how many days I have had some sort of "Brynlee appointment" in the last year, so I counted them up. We had over 100 days last year where we spent some portion of the day at an appointment for Brynlee. I don't know if I was expecting more or less, but Crikey! I am not complaining as I am very grateful that I am able to do what I need to do for her, but sometimes I think it would be nice to get to spend some of that time doing some funner things and not spending so much of that time in the car and on our beloved I-15.