November has really been a trying month. William IS sleeping better these days, and that’s a blessing.
William now has a g-tube (gastric tube). He is still eating, but is getting his medications and extra nutrients through the tube. It sure is convenient. He underwent surgery on Monday and was out of the hospital Tuesday afternoon. The doctor cleared us to travel “over the mountain and through the woods to Grandmother’s house” Wednesday. William slept almost the entire time we were in Mississippi. As he wasn’t getting up much, he became really congested. We were concerned it might turn into pneumonia, but once he started sitting up, the congestion got better.
The doctors told us that if he was weak going into the surgery, it would take longer to get back to normal afterwards. I would say William was a little weak before surgery. He had a virus which lasted 1 ½ weeks, then an ear infection, and was really shaky which we thought was increasing seizures. He is getting better slowly. He went to school today for the first time in about 2 weeks. He is awake more and is smiling more and more. His primary care physician gave him an all clear on his ear and the congestion, but he is still not walking. The longer he is off his feet, the weaker his legs are getting. We need to make sure he is feeling good for his upcoming trip to Florida.
William has been approved by Make a Wish, and our family will be going to Orlando in December. We will be visiting Disney World, Sea World, Universal Studios and staying at Give Kids the World Village (http://www.gktw.org/). I know we are going to have fun, but just getting everything together is going to be a job. It will be William’s first flight, and I pray we won’t have a 5+ hour layover!
In January, we will head back to St. Louis for another 48-hour videoed EEG. We are hoping to get his seizures under control. But, in the meantime, we will be trying different drugs and combinations. Hopefully, something will work better than the others.
God has a plan and we are along for the ride.
(Just an unrelated tidbit, William has been great at the doctor's offices and hospital lately. He doesn't cry or throw a fit, etc. He let the nurse take out his stiches and didn't even whimper. This is a big departure from his behavior a couple of months ago. I'm not sure if this is bad or good, but it sure is less stressful!)