Friday, January 4, 2013

All's well...

For those who have been urging me to continue to post updates about my son's condition, this post has been a draft for the last year. This one is from January 2011.

Well, they say that good things come to those who wait. I have not purposely left a small but budding audience wait with baited breath for the next post, however, I did not envision this post coming almost two years later. Wow almost two years have gone by, my how time flies. Now we all know why I could never make a living out of being a writer, I don't think I could meet their deadlines.

A lot has happened in two year. Since the last post my son's condition has improved significantly. He is right now over 2 years completely seizure free and 11 months medicine free on an epileptic syndrome that has no cure in the USA or the modern medically established world for that matter.

During the last two years we returned to Guayaquil, Ecuador for four additional trips. Once in February/March, once in July/August, December/January and right now we just finsished with round #7 of treatments. Since the 3rd round of treatments back in February/March of 2010, my son's brain mapping and EEG have shown a waveform of a perfectly normal child. Indeed, the brain mapping from round #4 of treatments continued the trend, my son presents himself both neurologically and socially as if he never had a seizure disorder at all. In fact the doctor just told us last week that if you took any average seven year old off the street and gave that seven year old an EEG or brain mapping and compared it with my son's, my son presents himself as an advanced cognitive thinker more neurologically sound than other children of his age.

The duration of the treatments have been the same for each round of treatments except during this one, which only lasts two weeks (we currently have two more days until we head back to the States). The natural thought is…well, if he's been seizure free since well before the last post, then why bring him back down here. I had the same question for the doctor. He responded that the goal is to allow him to become medicine free so you need to stay the course. Stay the course we did.

By the time of the last posting my son was Neurologically nearly perfect, however he was five years old and he could not read, nor could he construct numbers or letters and at the time he had difficulty holding onto a pencil. Everybody kept saying don't worry about that he's happy and he knows how to play well. Well playing comes naturally to all children and we did all we could to encourage the natural development of his imagination (which has always been enormous), his strength in music, his artistic sensibilities, and increasing the amount of finger type toys like tinker-toys and legos to strengthen his fine motor skills. Of course at times we loosened up on the TV watching and introduced him to more board and video games via computers.

Now much to the contrary of many contemporary parents who are opting to significantly limit and/or completely restrict all electronic media toys/games. We have always been of the mind that too much, or too little of things is neither too good nor too bad, but somewhere in between. I guess we've always been searching for the happy medium. I even read that when parents watch TV with their children that the amount of learning triples. We never use the TV as a baby sitter. Well I don't want get off on a rant about raising children in the digital age, that's another story for another post, back to the story you have all been interested enough to keep on checking back from time to time.

So, neurologically sound but still some work was necessary to be done for his social, behavioral and physical development. My son was in two different kindergartens last year, but a teacher in the first one was uncomfortable working with a student with epilepsy (even though we met her before the school year started and she understood that he was seizure free). The social stigmas associated with this disease is staggering sometimes.

Eventually we wound up having an issue with one of the two of his kindergarten teachers and apparently she is no longer working as a teacher in that particular school. We also took our son out of that school and placed him in a school with a more academically structured and emotionally nurturing environment.

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