New baby news
We had Jami’s appointment on Thursday, where we learned that our new family member will be another girl. We are generally excited about the news with the exception of Elijah, who wanted a brother. We have narrowed the list of names down to two, which are Lila Faith or Verity Faith. Lila is the name of Jami’s great-grandmother and has familial significance (Jami and her great-grandmother share a middle name) so naming the baby Lila Faith would incorporate a name from both families and would carry on the tradition of naming a girl from Jami’s maternal lineage. The name Verity would be a new introduction to the family. Verity was a popular Puritan name, which is the feminine form of the Latin word veritas, meaning truth. Feel free to offer your opinion on both names. We may just wait until the baby is born and we have a chance to see whether she looks like a Lila or a Verity.
We also had an appointment on Thursday with the neurologist that my primary neurologist sent me to for a second opinion. It was very encouraging. He ruled out Parkinson’s immediately and said that my disease is originating in my spinal cord. Specifically, he believes that there is a softening of the ends of the corticospinal tractswithin my spinal cord. Even more specifically, he believes that it is in the lateral corticospinal tract (see 1a in image). The result is hereditary disease known as Hereditary Spastic Paraplegia (HSP) **Also see this site for a good explanation**. . Another possibility is a disease known as Primary Lateral Sclerosis (PLS). These diseases look so much alike that it may take a couple years to distinguish them apart (Here is a chart that delineates the difference between the two). The good news is that both are treated in the same manner so I officially began treatment on Thursday night. Neither one can be reversed, stopped or slowed down. They are treated by treating the symptoms. The doctor put me on a drug called Baclofenand the early results are positive.
We are slowly adjusting to life as it is. My doctor has encouraged me to apply for a disabled parking permit, and I am already using a cane like a pro. Life is much busier right now as we are also beginning to plan a little remodeling for the new baby (nothing major, just switching rooms, painting and redesigning). 2008 will be a busy year for us and we certainly appreciate your prayers.
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