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2004-11-29 Update On Emily So, as you can plainly see, I have been fooling around with the picture at the top of the page. The original one was a little outdated, the next one was cute, but didn't come out to clearly so it just looked bad, and this one, although it does not include Julia looks cute. I took it with my cell phone too...those generally don't come out as clearly. I will eventually be taking a new picture of the three of them and using that instead.So, I have been meaning to do an "Emily" update since we came back from her appointment at Children's last week. It was "good" appointment if any appointment at Children's can be construed such. Provided that all goes well, she does not have to go back for three months, Her medicine is staying the same(same kind, same dose). Everytime we go, it gets just alittle easier. I mentioned her attention span problems at school(and sometimes even at home)and he gave me a form to fill out, as well as one for her teacher. The form is basically a "Does she do this? Does she do that? "type of questionnaire which is then calculated on some sort of a graph. It is the form that is used to determine whether or not a child has ADD/ADHD. Her neurologist did not feel that the medicine could be having that side effect but that it was more likely a result of her particular neuron disorder. Speaking of...her MRI has been reviewed and re-reviewed by the best doctors in the field...and no one has ever seen her particular case before. Neuron Migration Disorders are not common in and of themselves...her case is so uncommon that the best of the best have never even seen such a thing. So, she will not be taking part in the study they had planned afterall. Ryun is being scheduled for an MRI to see if what he was told he had as a child (one part of his brain was not as developed as another is what he remembers being told) is the same as what Emily has. If that turns out to be true, both Emily and Ryun will be part of an intensive study trying to figure out exactly what the heck this "thing" is and obviously establishing a genetic connection. I really, really hope that Ryun's MRI is normal. Please, please don't let this be a genetic thing, I can barely deal with one child having a serious medical problem. The thought that this could affect the other two as well...it's just unbearable. This is all so surreal. I keep thinking that one day I will be able to deal with this whole thing in a better way. Outwardly, people have actually commented on how well I have been dealing with this...Emily too. When I think about though...God it just tears me up inside. 0 comments so far |
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