Well, last week we finally had to go there, as we met Dr. Gust, the neurosurgeon who would be taking over that aspect of his care and got an MRI so that he could fully evaluate his back. He informed us that in addition to a tethered spinal cord and scoliosis, Mr. Boy has a condition called Sacral Dysgenesis (missing and damaged parts of the lower spine). This is so complex, that even though he is already a neurosurgery specialist, he has never seen this and would like to refer us to a specialist in Minnesota for evaluation. He seemed very pleased that Mr. Boy could move his legs and thought that as long as Mr. Boy has full use of his nerves coming from the affected column of spine (which we can't know till Mr. Boy can talk), then he should be able to walk. The tethered cord, scoliosis, and sacral dysgenesis should not cripple Mr. Boy but would cause pain if not treated. He decided that another specialist in MN should better know when or if they should do surgery and what therapies he would need.
This is the word now... but what we've found is that as we dive deeper into any one of Mr. Boy' s issues, more things seem to surface so we are hoping and praying that this is indeed the final word and that surgery will be able to fix these problems. We should be seeing the new specialist in a month or so. We'll keep you posted!
Mr. Boy is getting to be quite the little CHUNKY boy thanks to the feeding tube:)