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!)

 For the past week, William has been a little more unstable than usual, and it’s apparent that his seizure activity is increasing.  This was expected because, over time, his body becomes adjusted to one of his current medications.  His St. Louis neurologist prescribed a new drug that has been approved in the U.S. since January.  Evidently, the dosage prescribed was too high for him because it really knocked him for a loop.  Trying to get the right combinations and amounts is really tricky, especially on the phone, and William has been having a hard time adjusting (his parents too!).   He is doing better, we think, but still there is more tweaking to do.

William was scheduled for surgery today, but it was postponed because the surgeon had a family emergency.  We are getting a Mic-Key button, a low profile skin-level feeding tube inserted.   It’s mainly for active lifestyles allowing children to be more mobile while ensuring their nutritional health.  At this point, William can eat and swallow, but he isn’t getting the nutrition or fluids he needs.  With the tube, he will get what he needs in addition to eating what he wants.  Hopefully, he will gain some weight and strength.  The surgery is rescheduled for Monday, November 19. 

It’s funny how things work out.  William woke up today with sinus drainage and acted like he felt bad.  His primary care doctor diagnosed an ear infection and gave him antibiotics.  Now I’m glad he didn’t have surgery today.  Hopefully, he will be better by next week. 

All in all, this has been a week.  It’s been hard to see William not being able to walk at all on his own, but not wanting to slow down.  In that state, he requires 100% attention.   I’m ready for “normal,” whatever that is anymore.

Your concern, thoughts and prayers really do help.  Thank you!