I hear about these 'amazing doctors!' And I think, 'it sounds like this person could help Callie.'
So I make an appointment - usually really far off (in this case, it was 3 months we waited for this appointment).
The big day finally came. We were scheduled to see this doctor who is top in her field for rehabilitation medicine. She is someone who could help Callie with her internal rotation of her legs at the hip socket. Someone who could help us with getting her heal down. Someone who could help to relax some of her tone.
In the end, that is not what we had.
We actually had three appointments at the hospital that day. So we really wanted Callie to conserve her energy, which means using her wheelchair. And the rehab doc also wanted to see her in both the wheelchair and the walker - so we had to bring both, anyway!
The first appointment was to get new tread on her shoes.
The 2nd appointment was to get her shoes back and make sure they are working for her still.
Both of those went very well!
Between those 2 appointments, we had about an hour to kill. So we utilized the time with some school and therapy on the bus!
Then it was time for the big appointment...the one we had been waiting for. I even used the sibling room for the first time at the hospital to have fewer distractions with me!
This doctor came in, introduced herself, and looked at Callie - who was tired by this point. This doctor wanted her to relax while she moved her legs around (something that is uncomfortable and difficult for Callie to do when nervous). She was not very patient with her...
Then she wanted to see Callie walk. Callie walked in her shoes, without her shoes, and then demonstrated how she gets in and out of her wheelchair.
After that, we went back in the room to talk. She told me that we just need to get used to seeing her in a wheelchair. I asked why. She explained that because of the years of constant torque on her legs, her bones have grown into a spiral shape. There is nothing that can be done about this, surgically, medicinally, therapy wise, so she has come as far as she can. She said we could only help the internal rotation that is coming from the muscles being tight, and that some low dose injections of Botox would potentially help if we could come up with a 'proven' intensive therapy program for her. (We had already talked about the therapy she does, and were told that it is of no use.)
I didn't like this answer. I was grappling a bit with how to respond. I decided on getting as much info as I could. I asked that if we were to get better form in her gait, that over time, growth and cell replacement, would her bones remodel themselves in a straight, or at straighter fashion.
Her comment was that she had heard that I ask a lot of questions. She said that the short answer is no.
I then asked how she could tell that her bones were twisted. This is a concept that I had not encountered so far, and wanted as much info as I could get to do some research on my own for this!
She showed me a test and the resulting angle of her foot when relaxed in a certain position, which she said indicated the twisting of the bones.
I left feeling pretty defeated. I have come a long way since first being suggested to look into a wheelchair for Callie. I no longer feel like a piece of me dies when I see her in it. (Though as I get up to Thanksgiving I will talk more about how it felt for her to ASK to be in her wheelchair...that hurt a bit!) But I do not want to 'just get used to her in it,' either! I want to give her every possible chance at the best life long mobility we can attain for her.
I went home. I did lots of research. Lots of research. At one point I wondered how I had missed twisting of the bones as even a possibility!
I also researched Botox a lot. It is something that I am hesitant to do for Callie. I do not want her to NEED to do something, especially something as toxic as botox to maintain mobility. My initial reaction was that no, we probably do not want to do this.
This post if getting long enough, and I need to go make dinner...so I will continue it later with what I have learned and who I have talked to since this that has made me feel better about it.