Today we had an appointment with our rehabilitation doctor, Dr. Such-Neibaur. This was only our second appointment with Dr. Such-Neibaur as our old rehab doctor moved away to California. Let's just say that our first appointment was not a good one. After that appointment, I didn't have the feeling that Dr. Such-Neibaur and us were on the same page. I almost felt like she was treating Brynlee like a traumatic brain injury patient and not a spinal cord injury patient and that she knew nothing about Brynlee's history.
Thankfully, today's appointment went so much better. It was a pretty quick appointment as there really isn't too much more that we can do for Brynlee at this point. We already do physical therapy, she has her DAFO braces, we are working on the wheelchair, so there wasn't too much that we needed to discuss. Dr. Such-Neibaur did clarify to me, however, why she wants Brynlee to have a power wheelchair. She told me that it will allow her to be able to keep up with her peers at school and wherever so much easier than a manual chair. I explained to her that a power chair just isn't an option for us as I have no way to transport one, and maybe this is vain, but I don't really want to have a way to transport one. So often I feel like Brynlee's cancer and her disability have defined us and our family over the last year and a half. I don't know how this is going to sound, and I really don't care how it sounds, but I really just don't want a van with a lift (not that it is even an option for us right now anyway). However, Dr. Such-Neibaur did point out that there are school buses for such students and that a power chair could be beneficial even if we don't have a lift in our vehicle. Regardless, at this point, we are going to pursue the manual chair and see how it goes.
Dr. Such-Neibaur also was so positive at this visit about our efforts to improve her strength. She gave me encouraging information about a facility here in Utah that might be an option for Brynlee when she gets a little bit bigger. Basically they have a robotic type of deal that walks for you and does e-stim at the same time. She said that she didn't think they had their pediatric unit available yet, but she was going to check on it and see how big Brynlee needs to be to start going there. She also told me that stem cell research here in the US is coming along and that she is expecting clinical trials to start in the next five years. They have already started stem cell injections in other countries, and by stem cells, I am referring to adult or non embryonic stem cells, but she said the facilities in the other countries just don't have it down yet and that only 1 out of maybe 100 or 1000 really truly benefit from it and see any results and that we just need to be patient and that the stem cell therapy will happen in Brynlee's lifetime (optimistically hoping that we conquer this cancer thing first), and we also need to keep Brynlee strong and ready to go so that when these new therapies and treatments come along that Brynlee is ready for them.
So overall, it was really a positive visit today, which I am glad. I think I had psyched myself out that it was going to be a waste because of how our last visit went.
Next up, wheelchair fitting tomorrow.
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