This first full week of September proves to be a busy one, for me and the boys!We have all had the sniffles. Conner had appointments with genetics and ENT in Kansas City. I received a letter yesterday from the genetics doctor for insurance so that Conner can be tested for the SCN1A gene. Hopefully it's a go from insurance. I don't think there are very many options after this one, except for the neurosurgery consult and maybe a VNS monitor. We were at about one seizure every 4 weeks and then we went 6 weeks without one. This week he has had 4. Just when I think he may be moving forward, there always seems to be a step back. I am still convinced his new medication Trileptol is the main reason of the seizures slowing down. I sit patiently by my phone today awaiting the call from his neurologist. Yesterday they assured me that seizures can increase with a cold or illness. Who knows....
Minus the seizures this week has been great! The weather is finally decent. Conner learned how to ride his bike, Shane learned how to write "daddy" and tell time, and Conner figured out how to climb my entertainment shelf and turn on the radio.
In my next post in a few days, I will go over some of the tests he has had done. In the meantime God Bless.....
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