Well, since I last wrote on Tuesday night we've had a flurry of activity. My mom and sister left on Friday, following Lauren's graduation from her precious preschool. We went to Whidbey Island yesterday to relax and enjoy some sunshine (finally!) and celebrated Father's Day with David's parents. Today, we had a great Father's Day in Seattle - including a trip to the pool, lots of play time, US Open watching, and the big capper - the introduction of two fish to our family. Lauren and Jacob have persistently wanted a pet for sometime and we finally caved - although they're pretty tame pets.
I haven't had the opportunity to update the blog with some interesting news from Dr. Cowan, Taylor's neurologist. He called the day after her appointment and said he had studied her MRI further and researched, and he wanted to clarify that he doesn't think she has Septo-Optic Dysplasia. It's a fine line since so many of the conditions overlap, but since her optic nerve is fine and she doesn't have endocrinology issues, he thinks she has "agenisis (or absence) of the corpus callosum" - which is simply part of her brain is missing. The septum pellucidum is actually part of the corpus callosum, so we can simplify the description of her condition. He again encouraged us to not focus too much on terminology, and focus on helping her symptoms (namely - motor skills and vision therapy at this point). He really is such a nice man and I appreciated the house call and clarification. So, we may over time look for another expert that focuses on this specific condition, but we're learning that our energy is best focused on helping Taylor's symptoms so her brain can learn new pathways.
Some have asked what agenisis of the corpus callosum means, and basically it means that she was born without the part of her brain that connects the right and left hemispheres. While the most efficient connection is not there, the brain is miraculous and will often develop new pathways to share information between the two hemispheres. The best explanation I've heard is this: If you think of the right hemisphere as Seattle and the left hemisphere as Kirkland (or eastside city separated from Seattle by Lake Washington), Taylor does not have a 520 bridge - or the most efficient way to get across. But, Taylor could use a ferry, speedboat, swim, etc. to get across. And if her new pathways develop well, overtime she can catch up to her peers. We just need to help her develop a really fast speedboat.
We were saddened by the untimely death of Tim Russert, the NBC commentator. So many were touched by him and I'm taking one of his mantras - hanging on the wall of his office - to heart "Thou Shalt Not Whine." Some have asked if we have down days - and we do - but we try really hard to remain positive and "enjoy the now".
Today I am so thankful for the "dad's" in my life - my own wonderful father who is the epitome of strength of character and integrity, my grandfathers who taught me so much about hard work and generosity, David's father who continues to learn new things and embrace life, and of course, David himself. As the blog writer, I can say that Taylor is one blessed little girl to have such an amazing dad. Those of you who know him, I'm sure, agree. I could go on and on, but he would be embarrassed:)
Happy Father's Day to all of the dad's!
I haven't had the opportunity to update the blog with some interesting news from Dr. Cowan, Taylor's neurologist. He called the day after her appointment and said he had studied her MRI further and researched, and he wanted to clarify that he doesn't think she has Septo-Optic Dysplasia. It's a fine line since so many of the conditions overlap, but since her optic nerve is fine and she doesn't have endocrinology issues, he thinks she has "agenisis (or absence) of the corpus callosum" - which is simply part of her brain is missing. The septum pellucidum is actually part of the corpus callosum, so we can simplify the description of her condition. He again encouraged us to not focus too much on terminology, and focus on helping her symptoms (namely - motor skills and vision therapy at this point). He really is such a nice man and I appreciated the house call and clarification. So, we may over time look for another expert that focuses on this specific condition, but we're learning that our energy is best focused on helping Taylor's symptoms so her brain can learn new pathways.
Some have asked what agenisis of the corpus callosum means, and basically it means that she was born without the part of her brain that connects the right and left hemispheres. While the most efficient connection is not there, the brain is miraculous and will often develop new pathways to share information between the two hemispheres. The best explanation I've heard is this: If you think of the right hemisphere as Seattle and the left hemisphere as Kirkland (or eastside city separated from Seattle by Lake Washington), Taylor does not have a 520 bridge - or the most efficient way to get across. But, Taylor could use a ferry, speedboat, swim, etc. to get across. And if her new pathways develop well, overtime she can catch up to her peers. We just need to help her develop a really fast speedboat.
We were saddened by the untimely death of Tim Russert, the NBC commentator. So many were touched by him and I'm taking one of his mantras - hanging on the wall of his office - to heart "Thou Shalt Not Whine." Some have asked if we have down days - and we do - but we try really hard to remain positive and "enjoy the now".
Today I am so thankful for the "dad's" in my life - my own wonderful father who is the epitome of strength of character and integrity, my grandfathers who taught me so much about hard work and generosity, David's father who continues to learn new things and embrace life, and of course, David himself. As the blog writer, I can say that Taylor is one blessed little girl to have such an amazing dad. Those of you who know him, I'm sure, agree. I could go on and on, but he would be embarrassed:)
Happy Father's Day to all of the dad's!
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