We finally had our appointment back at Shriner's after the MRI. We received good and bad news. The good news is the MRI of both the brain and spinal cord were normal, they did not find anything wrong. That was a relief because it means she has no neurological developmental damage in that sense, but now we are back at stage zero again. WHAT IS WRONG THEN?????? Here is her latest picture. Her feet are still very dorsiflexed, and the doctors now believe that she has some congenital absence of some anterior horn cells, which gives it a pattern similar to what they sometimes see in cases of arthrogryposis. Not very reassuring... But the doctor said that more than a leg function, walking is pretty much a brain decision. She needs to decide that she is going to try to stand up. That life will be more interesting that way. For now, she is very comfortable commando-crawling everywhere. She still hasn't sat up by herself, so she is very delayed developmentally at least in the physical part. We need to wait for her to decide to do these things before we can proceed. Then they will try to do serial casting again to try to bring the feet down a little more so that she doesn't walk on her heels, and then , when she is much older, they think she will need surgery on her legs/feet to do a surgical release and transfer of the anterior ankle moving one of the muscles to the calcaneus. In summary, we have a rough road ahead of us, but it was certainly a relief to hear that her brain and spinal cord are normal. But now we wait again, this time we wait for Gabbie to decide to sit up, stand up, etc. Only then we can move to our next steps in this journey.
Wednesday, August 3, 2011
What do you mean "you don't know" ? We have to wait again?
We finally had our appointment back at Shriner's after the MRI. We received good and bad news. The good news is the MRI of both the brain and spinal cord were normal, they did not find anything wrong. That was a relief because it means she has no neurological developmental damage in that sense, but now we are back at stage zero again. WHAT IS WRONG THEN?????? Here is her latest picture. Her feet are still very dorsiflexed, and the doctors now believe that she has some congenital absence of some anterior horn cells, which gives it a pattern similar to what they sometimes see in cases of arthrogryposis. Not very reassuring... But the doctor said that more than a leg function, walking is pretty much a brain decision. She needs to decide that she is going to try to stand up. That life will be more interesting that way. For now, she is very comfortable commando-crawling everywhere. She still hasn't sat up by herself, so she is very delayed developmentally at least in the physical part. We need to wait for her to decide to do these things before we can proceed. Then they will try to do serial casting again to try to bring the feet down a little more so that she doesn't walk on her heels, and then , when she is much older, they think she will need surgery on her legs/feet to do a surgical release and transfer of the anterior ankle moving one of the muscles to the calcaneus. In summary, we have a rough road ahead of us, but it was certainly a relief to hear that her brain and spinal cord are normal. But now we wait again, this time we wait for Gabbie to decide to sit up, stand up, etc. Only then we can move to our next steps in this journey.
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