Like everyone else I've been busy juggling work, housework, back to school, and yomtov. Unfortunately that leaves me with no time to post updates on Yossi. Today blogging is my top priority, time to do something for myself!
Yossi is doing Great! it is such a Relief!!!!!!!
we just had a stretch of 3 days completely seizure free and it felt so good!
today we went back to seizure land with a string of 4 seizures in a row a present from super early wakeup combined with the raining weather in the morning. overall though yossi's seizures have been holding steady at under 5 a day and he is finally able to live again! without seizures disrupting his day every few minutes, he is even gain new skills.
over the 3 week summer vacation his communication skills completely disappeared because he was missing the intense practice that he usually gets. baruch hashem now that school is a few weeks in, his communication is back, he is making clear choices of food and activities, and using his "yes/no" and "i like/dont like" cards to have great conversations with us. he even added a new word to his verbal repertoire : cantaloupe (and its about time too because he LOVES cantaloupe)
Yossi is making such wonderful progress all while tolerating the rapid changes in his medication. we've continued decreasing Yossi's prednisone and we have now reached the halfway mark! usually every second decrease is combined with a slightly increased dose of valium to keep the seizures away and thankfully he is not too drowsy (a side effect of too much valium). it does make for an interesting schedule, because every time we make a change, yossi sleeps longer while his body adjusts. he has arrived at school well after 12 noon on more than one occasion. if we were to wake him up it would trigger his seizures so we definitely live by the rule "never wake a sleeping baby", ok he is not a baby, he is a very big boy who is clever and growing, and he has an awesome school that is totally understanding.
so if you wonder why you havent heard any news in a while, its cuz I've been busy driving yossi to school at all kinds of strange hours :)
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