|
|
|
|
I haven't posted anything in a couple weeks. Jack's been having a hard time, and it's gotten me completely exhausted. It's not that anything bad has happened, per se. We realized in talking with our nurse yesterday that Jack's taken another turn downward. I think it started when he was teething a couple weeks ago. Everything's a chain reaction from there. So here's what we're seeing: Jack's drinking 10-12oz/day, the past two days he's been refusing his meds by touching his tongue to the roof of his mouth, he sleeps ALL the time, he's not verbalizing much, and his seizures have started to decrease. One would think that a decrease in seizure activity should be a good sign! Our nurse, however, said that a decrease in seizures combined with a noticeable change in his verbal ability is a pretty clear sign that his neurological disease has progressed significantly. Needless to say, yesterday was a hard day. Today we adjust our expectations and move forward with a beautiful little boy who, despite everything, is clearly running the show, and does it with a smile. |