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Tuesday, March 1, 2011

New doses of meds

Just a quick note...
Jackson started the new doses of his seizure meds today. He was fed and given meds at 7am. He was so sleepy at 8:30 by 9 am he was asleep. I knew he could never make his day at school so he stayed home. He rested and woke up about 10:45 after I fed him his 10:00 feed. He has had some myoclonic jerks and some tonic seizures today. It will take some time for the new dosages to get in his system. We are giving the meds about two weeks to work and notice a diffference. If they don't do the job we can increase a little more. I really don't want to have to give him anymore meds than necessary.

Facing Jackson's terminal illness everyday is by far the hardest thing that has ever happened in my life. It helps my spirits so much to know that so many people care about us and this little thing called the Jackson Culley Mito What 5k! . Thanks so much to each and everyone of you that has registered for Jackson's race. Your support means more than you will ever know. So, even if you can't be with us on race day and would like to support our efforts to fund research for a cure for mito please register anyway. I will get the shirt to you through the mail or whatever way I can! I would love for you to get Jack's shirt and wear it with pride!

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