Jackson began having his tonic seizures again. It was something I had been keeping my eye on with him lately. As soon as I was sure that it was his seizures and not something behavioral, I increased his clonazepam per Jackson's protocol. I think the increase has helped control the seizures better. I got an apt to see Dr. Morgan our Memphis neuro. They weighed him when we got there and you guys will never guess how much this boy weighs! Drum roll please...44.2lbs!!!!! I am so proud of every pound! I am so grateful that he is able to grow! We weren't sure at the beginning of this mito journey that Jackson would ever have a chance to grow this much! As soon as Dr. Morgan saw him she was amazed at his growth. I had written all my concerns down about Jackson before our apt so I wouldn't forget anything. After describing the seizures I'm seeing Dr. Morgan felt that it was Jackson's tonic seizures rearing their ugly head again. It's time to adjsut seizures meds again due to his growth/weight gain. Which is what I suspected was going on. So she was updated on Jackson, invited to the race and saw Jackson and increased his meds today. It was a good visit. I am going to work on getting Jackson's sleep study , sweat test, and get a pulmo apt this week. Dr, Morgan thought we should see a pulmo here to get the sweat test done. All of these things were recommended to be done by Jackson's pulmo in Houston. I feel with Jackson's respitory history we need a pulmo here on Jackson's team. I am looking for someone willing to work with all of Jackson's doctors on the team for his benefit. I will take this approach when I get the pulmo apt. I hope it works.
One ironic thing about our visit... the neuro clinic is now in the crisp, new hospital. Along with all this newness is new art for the hospital. When you walk into the clinic you immediately see a huge picture window. Right outside this huge picture window is a new piece of art called "Where the wind plays". It is so cute. It is a reallly neat piece. I really liked it. It is a whole garden, bugs and all, made out of metal. Some of the flowers were made to spin. I showed Jack this metal garden and he kind of smiled at it. After the smile and loking at the spinning flowers Jackson has a seizure. He recoverd quickly and it dawns on me...of course the spinning flowers! Spinning, flashing things are not good for kids that have seizures. I turned him around to look the other way about that time they called us back. Why on earth would you put spinning things right outside the window of a neurology clinicSomebody didn't think that one through.
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